case study health concerns

Health Case Studies

(29 reviews)

Glynda Rees, British Columbia Institute of Technology

Rob Kruger, British Columbia Institute of Technology

Janet Morrison, British Columbia Institute of Technology

Publisher: BCcampus

Language: English

Formats Available

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Reviewed by Jessica Sellars, Medical assistant office instructor, Blue Mountain Community College on 10/11/23

Comprehensiveness rating: 5 see less

This is a book of compiled and very well organized patient case studies. The author has broken it up by disease patient was experiencing and even the healthcare roles that took place in this patients care. There is a well thought out direction and plan. There is an appendix to refer to as well if you are needing to find something specific quickly. I have been looking for something like this to help my students have a base to do their project on. This is the most comprehensive version I have found on the subject.

Content Accuracy rating: 5

This is a book compiled of medical case studies. It is very accurate and can be used to learn from great care and mistakes.

Relevance/Longevity rating: 5

This material is very relevant in this context. It also has plenty of individual case studies to utilize in many ways in all sorts of medical courses. This is a very useful textbook and it will continue to be useful for a very long time as you can still learn from each study even if medicine changes through out the years.

Clarity rating: 5

The author put a lot of thought into the ease of accessibility and reading level of the target audience. There is even a "how to use this resource" section which could be extremely useful to students.

Consistency rating: 5

The text follows a very consistent format throughout the book.

Modularity rating: 5

Each case study is individual broken up and in a group of similar case studies. This makes it extremely easy to utilize.

Organization/Structure/Flow rating: 5

The book is very organized and the appendix is through. It flows seamlessly through each case study.

Interface rating: 5

I had no issues navigating this book, It was clearly labeled and very easy to move around in.

Grammatical Errors rating: 5

I did not catch any grammar errors as I was going through the book

Cultural Relevance rating: 5

This is a challenging question for any medical textbook. It is very culturally relevant to those in medical or medical office degrees.

I have been looking for something like this for years. I am so happy to have finally found it.

Reviewed by Cindy Sun, Assistant Professor, Marshall University on 1/7/23

Interestingly, this is not a case of ‘you get what you pay for’. Instead, not only are the case studies organized in a fashion for ease of use through a detailed table of contents, the authors have included more support for both faculty and students. For faculty, the introduction section titled ‘How to use this resource’ and individual notes to educators before each case study contain application tips. An appendix overview lists key elements as issues / concepts, scenario context, and healthcare roles for each case study. For students, learning objectives are presented at the beginning of each case study to provide a framework of expectations.

The content is presented accurately and realistic.

The case studies read similar to ‘A Day In the Life of…’ with detailed intraprofessional communications similar to what would be overheard in patient care areas. The authors present not only the view of the patient care nurse, but also weave interprofessional vantage points through each case study by including patient interaction with individual professionals such as radiology, physician, etc.

In addition to objective assessment findings, the authors integrate standard orders for each diagnosis including medications, treatments, and tests allowing the student to incorporate pathophysiology components to their assessments.

Each case study is arranged in the same framework for consistency and ease of use.

This compilation of eight healthcare case studies focusing on new onset and exacerbation of prevalent diagnoses, such as heart failure, deep vein thrombosis, cancer, and chronic obstructive pulmonary disease advancing to pneumonia.

Each case study has a photo of the ‘patient’. Simple as this may seem, it gives an immediate mental image for the student to focus.

Interface rating: 4

As noted by previous reviewers, most of the links do not connect active web pages. This may be due to the multiple options for accessing this resource (pdf download, pdf electronic, web view, etc.).

Grammatical Errors rating: 4

A minor weakness that faculty will probably need to address prior to use is regarding specific term usages differences between Commonwealth countries and United States, such as lung sound descriptors as ‘quiet’ in place of ‘diminished’ and ‘puffers’ in place of ‘inhalers’.

The authors have provided a multicultural, multigenerational approach in selection of patient characteristics representing a snapshot of today’s patient population. Additionally, one case study focusing on heart failure is about a middle-aged adult, contrasting to the average aged patient the students would normally see during clinical rotations. This option provides opportunities for students to expand their knowledge on risk factors extending beyond age.

This resource is applicable to nursing students learning to care for patients with the specific disease processes presented in each case study or for the leadership students focusing on intraprofessional communication. Educators can assign as a supplement to clinical experiences or as an in-class application of knowledge.

Reviewed by Stephanie Sideras, Assistant Professor, University of Portland on 8/15/22

The eight case studies included in this text addressed high frequency health alterations that all nurses need to be able to manage competently. While diabetes was not highlighted directly, it was included as a potential comorbidity. The five overarching learning objectives pulled from the Institute of Medicine core competencies will clearly resonate with any faculty familiar with Quality and Safety Education for Nurses curriculum.

The presentation of symptoms, treatments and management of the health alterations was accurate. Dialogue between the the interprofessional team was realistic. At times the formatting of lab results was confusing as they reflected reference ranges specific to the Canadian healthcare system but these occurrences were minimal and could be easily adapted.

The focus for learning from these case studies was communication - patient centered communication and interprofessional team communication. Specific details, such as drug dosing, was minimized, which increases longevity and allows for easy individualization of the case data.

While some vocabulary was specific to the Canadian healthcare system, overall the narrative was extremely engaging and easy to follow. Subjective case data from patient or provider were formatted in italics and identified as 'thoughts'. Objective and behavioral case data were smoothly integrated into the narrative.

The consistency of formatting across the eight cases was remarkable. Specific learning objectives are identified for each case and these remain consistent across the range of cases, varying only in the focus for the goals for each different health alterations. Each case begins with presentation of essential patient background and the progress across the trajectory of illness as the patient moves from location to location encountering different healthcare professionals. Many of the characters (the triage nurse in the Emergency Department, the phlebotomist) are consistent across the case situations. These consistencies facilitate both application of a variety of teaching methods and student engagement with the situated learning approach.

Case data is presented by location and begins with the patient's first encounter with the healthcare system. This allows for an examination of how specific trajectories of illness are manifested and how care management needs to be prioritized at different stages. This approach supports discussions of care transitions and the complexity of the associated interprofessional communication.

The text is well organized. The case that has two levels of complexity is clearly identified

The internal links between the table of contents and case specific locations work consistently. In the EPUB and the Digital PDF the external hyperlinks are inconsistently valid.

The grammatical errors were minimal and did not detract from readability

Cultural diversity is present across the cases in factors including race, ethnicity, socioeconomic status, family dynamics and sexual orientation.

The level of detail included in these cases supports a teaching approach to address all three spectrums of learning - knowledge, skills and attitudes - necessary for the development of competent practice. I also appreciate the inclusion of specific assessment instruments that would facilitate a discussion of evidence based practice. I will enjoy using these case to promote clinical reasoning discussions of data that is noticed and interpreted with the resulting prioritizes that are set followed by reflections that result from learner choices.

Reviewed by Chris Roman, Associate Professor, Butler University on 5/19/22

It would be extremely difficult for a book of clinical cases to comprehensively cover all of medicine, and this text does not try. Rather, it provides cases related to common medical problems and introduces them in a way that allows for various... read more

Comprehensiveness rating: 4 see less

The narrative form of the cases is less subject to issues of accuracy than a more content-based book would be. That said, the cases are realistic and reasonable, avoiding being too mundane or too extreme.

These cases are narrative and do not include many specific mentions of drugs, dosages, or other aspects of clinical care that may grow/evolve as guidelines change. For this reason, the cases should be “evergreen” and can be modified to suit different types of learners.

Clarity rating: 4

The text is written in very accessible language and avoids heavy use of technical language. Depending on the level of learner, this might even be too simplistic and omit some details that would be needed for physicians, pharmacists, and others to make nuanced care decisions.

The format is very consistent with clear labeling at transition points.

The authors point out in the introductory materials that this text is designed to be used in a modular fashion. Further, they have built in opportunities to customize each cases, such as giving dates of birth at “19xx” to allow for adjustments based on instructional objectives, etc.

The organization is very easy to follow.

I did not identify any issues in navigating the text.

The text contains no grammatical errors, though the language is a little stiff/unrealistic in some cases.

Cases involve patients and members of the care team that are of varying ages, genders, and racial/ethnic backgrounds

Reviewed by Trina Larery, Assistant Professor, Pittsburg State University on 4/5/22

The book covers common scenarios, providing allied health students insight into common health issues. The information in the book is thorough and easily modified if needed to include other scenarios not listed. The material was easy to understand... read more

Content Accuracy rating: 4

The treatments were explained and rationales were given, which can be very helpful to facilitate effective learning for a nursing student or novice nurse. The case studies were accurate in explanation. The DVT case study incorrectly identifies the location of the clot in the popliteal artery instead of in the vein.

The content is relevant to a variety of different types of health care providers and due to the general nature of the cases, will remain relevant over time. Updates should be made annually to the hyperlinks and to assure current standard of practice is still being met.

Clear, simple and easy to read.

Consistent with healthcare terminology and framework throughout all eight case studies.

The text is modular. Cases can be used individually within a unit on the given disease process or relevant sections of a case could be used to illustrate a specific point providing great flexibility. The appendix is helpful in locating content specific to a certain diagnosis or a certain type of health care provider.

The book is well organized, presenting in a logical clear fashion. The appendix allows the student to move about the case study without difficulty.

The interface is easy and simple to navigate. Some links to external sources might need to be updated regularly since those links are subject to change based on current guidelines. A few hyperlinks had "page not found".

Few grammatical errors were noted in text.

The case studies include people of different ethnicities, socioeconomic status, ages, and genders to make this a very useful book.

I enjoyed reading the text. It was interesting and relevant to today's nursing student. There are roughly 25 broken online links or "pages not found", care needs to be taken to update at least annually and assure links are valid and utilizing the most up to date information.

Reviewed by Benjamin Silverberg, Associate Professor/Clinician, West Virginia University on 3/24/22

Comprehensiveness rating: 3 see less

The appendix reviews the "key roles" and medical venues found in all 8 cases, but is fairly spartan on medical content. The table of contents at the beginning only lists the cases and locations of care. It can be a little tricky to figure out what is going on where, especially since each case is largely conversation-based. Since this presents 8 cases (really 7 with one being expanded upon), there are many medical topics (and venues) that are not included. It's impossible to include every kind of situation, but I'd love to see inclusion of sexual health, renal pathology, substance abuse, etc.

Though there are differences in how care can be delivered based on personal style, changing guidelines, available supplies, etc, the medical accuracy seems to be high. I did not detect bias or industry influence.

Relevance/Longevity rating: 4

Medications are generally listed as generics, with at least current dosing recommendations. The text gives a picture of what care looks like currently, but will be a little challenging to update based on new guidelines (ie, it can be hard to find the exact page in which a medication is dosed/prescribed). Even if the text were to be a little out of date, an instructor can use that to point out what has changed (and why).

Clear text, usually with definitions of medical slang or higher-tier vocabulary. Minimal jargon and there are instances where the "characters" are sorting out the meaning as well, making it accessible for new learners, too.

Overall, the style is consistent between cases - largely broken up into scenes and driven by conversation rather than descriptions of what is happening.

There are 8 (well, again, 7) cases which can be reviewed in any order. Case #2 builds upon #1, which is intentional and a good idea, though personally I would have preferred one case to have different possible outcomes or even a recurrence of illness. Each scene within a case is reasonably short.

Organization/Structure/Flow rating: 4

These cases are modular and don't really build on concepts throughout. As previously stated, case #2 builds upon #1, but beyond that, there is no progression. (To be sure, the authors suggest using case #1 for newer learners and #2 for more advanced ones.) The text would benefit from thematic grouping, a longer introduction and debriefing for each case (there are learning objectives but no real context in medical education nor questions to reflect on what was just read), and progressively-increasing difficulty in medical complexity, ethics, etc.

I used the PDF version and had no interface issues. There are minimal photographs and charts. Some words are marked in blue but those did not seem to be hyperlinked anywhere.

No noticeable errors in grammar, spelling, or formatting were noted.

I appreciate that some diversity of age and ethnicity were offered, but this could be improved. There were Canadian Indian and First Nations patients, for example, as well as other characters with implied diversity, but there didn't seem to be any mention of gender diverse or non-heterosexual people, or disabilities. The cases tried to paint family scenes (the first patient's dog was fairly prominently mentioned) to humanize them. Including more cases would allow for more opportunities to include sex/gender minorities, (hidden) disabilities, etc.

The text (originally from 2017) could use an update. It could be used in conjunction with other Open Texts, as a compliment to other coursework, or purely by itself. The focus is meant to be on improving communication, but there are only 3 short pages at the beginning of the text considering those issues (which are really just learning objectives). In addition to adding more cases and further diversity, I personally would love to see more discussion before and after the case to guide readers (and/or instructors). I also wonder if some of the ambiguity could be improved by suggesting possible health outcomes - this kind of counterfactual comparison isn't possible in real life and could be really interesting in a text. Addition of comprehension/discussion questions would also be worthwhile.

Reviewed by Danielle Peterson, Assistant Professor, University of Saint Francis on 12/31/21

This text provides readers with 8 case studies which include both chronic and acute healthcare issues. Although not comprehensive in regard to types of healthcare conditions, it provides a thorough look at the communication between healthcare workers in acute hospital settings. The cases are primarily set in the inpatient hospital setting, so the bulk of the clinical information is basic emergency care and inpatient protocol: vitals, breathing, medication management, etc. The text provides a table of contents at opening of the text and a handy appendix at the conclusion of the text that outlines each case’s issue(s), scenario, and healthcare roles. No index or glossary present.

Although easy to update, it should be noted that the cases are taking place in a Canadian healthcare system. Terms may be unfamiliar to some students including “province,” “operating theatre,” “physio/physiotherapy,” and “porter.” Units of measurement used include Celsius and meters. Also, the issue of managed care, health insurance coverage, and length of stay is missing for American students. These are primary issues that dictate much of the healthcare system in the US and a primary job function of social workers, nurse case managers, and medical professionals in general. However, instructors that wish to add this to the case studies could do so easily.

The focus of this text is on healthcare communication which makes it less likely to become obsolete. Much of the clinical information is stable healthcare practice that has been standard of care for quite some time. Nevertheless, given the nature of text, updates would be easy to make. Hyperlinks should be updated to the most relevant and trustworthy sources and checked frequently for effectiveness.

The spacing that was used to note change of speaker made for ease of reading. Although unembellished and plain, I expect students to find this format easy to digest and interesting, especially since the script is appropriately balanced with ‘human’ qualities like the current TV shows and songs, the use of humor, and nonverbal cues.

A welcome characteristic of this text is its consistency. Each case is presented in a similar fashion and the roles of the healthcare team are ‘played’ by the same character in each of the scenarios. This allows students to see how healthcare providers prioritize cases and juggle the needs of multiple patients at once. Across scenarios, there was inconsistency in when clinical terms were hyperlinked.

The text is easily divisible into smaller reading sections. However, since the nature of the text is script-narrative format, if significant reorganization occurs, one will need to make sure that the communication of the script still makes sense.

The text is straightforward and presented in a consistent fashion: learning objectives, case history, a script of what happened before the patient enters the healthcare setting, and a script of what happens once the patient arrives at the healthcare setting. The authors use the term, “ideal interactions,” and I would agree that these cases are in large part, ‘best case scenarios.’ Due to this, the case studies are well organized, clear, logical, and predictable. However, depending on the level of student, instructors may want to introduce complications that are typical in the hospital setting.

The interface is pleasing and straightforward. With exception to the case summary and learning objectives, the cases are in narrative, script format. Each case study supplies a photo of the ‘patient’ and one of the case studies includes a link to a 3-minute video that introduces the reader to the patient/case. One of the highlights of this text is the use of hyperlinks to various clinical practices (ABG, vital signs, transfer of patient). Unfortunately, a majority of the links are broken. However, since this is an open text, instructors can update the links to their preference.

Although not free from grammatical errors, those that were noticed were minimal and did not detract from reading.

Cultural Relevance rating: 4

Cultural diversity is visible throughout the patients used in the case studies and includes factors such as age, race, socioeconomic status, family dynamics, and sexual orientation. A moderate level of diversity is noted in the healthcare team with some stereotypes: social workers being female, doctors primarily male.

As a social work instructor, I was grateful to find a text that incorporates this important healthcare role. I would have liked to have seen more content related to advance directives, mediating decision making between the patient and care team, emotional and practical support related to initial diagnosis and discharge planning, and provision of support to colleagues, all typical roles of a medical social worker. I also found it interesting that even though social work was included in multiple scenarios, the role was only introduced on the learning objectives page for the oncology case.

Reviewed by Crystal Wynn, Associate Professor, Virginia State University on 7/21/21

The text covers a variety of chronic diseases within the cases; however, not all of the common disease states were included within the text. More chronic diseases need to be included such as diabetes, cancer, and renal failure. Not all allied health care team members are represented within the case study. Key terms appear throughout the case study textbook and readers are able to click on a hyperlink which directs them to the definition and an explanation of the key term.

Content is accurate, error-free and unbiased.

The content is up-to-date, but not in a way that will quickly make the text obsolete within a short period of time. The text is written and/or arranged in such a way that necessary updates will be relatively easy and straightforward to implement.

The text is written in lucid, accessible prose, and provides adequate context for any jargon/technical terminology used

The text is internally consistent in terms of terminology and framework.

The text is easily and readily divisible into smaller reading sections that can be assigned at different points within the course. Each case can be divided into a chronic disease state unit, which will allow the reader to focus on one section at a time.

Organization/Structure/Flow rating: 3

The topics in the text are presented in a logical manner. Each case provides an excessive amount of language that provides a description of the case. The cases in this text reads more like a novel versus a clinical textbook. The learning objectives listed within each case should be in the form of questions or activities that could be provided as resources for instructors and teachers.

Interface rating: 3

There are several hyperlinks embedded within the textbook that are not functional.

The text contains no grammatical errors.

Cultural Relevance rating: 3

The text is not culturally insensitive or offensive in any way. More examples of cultural inclusiveness is needed throughout the textbook. The cases should be indicative of individuals from a variety of races and ethnicities.

Reviewed by Rebecca Hillary, Biology Instructor, Portland Community College on 6/15/21

This textbook consists of a collection of clinical case studies that can be applicable to a wide range of learning environments from supplementing an undergraduate Anatomy and Physiology Course, to including as part of a Medical or other health care program. I read the textbook in E-reader format and this includes hyperlinks that bring the students to subsequent clinical study if the book is being used in a clinical classroom. This book is significantly more comprehensive in its approach from other case studies I have read because it provides a bird’s eye view of the many clinicians, technicians, and hospital staff working with one patient. The book also provides real time measurements for patients that change as they travel throughout the hospital until time of discharge.

Each case gave an accurate sense of the chaos that would be present in an emergency situation and show how the conditions affect the practitioners as well as the patients. The reader gets an accurate big picture--a feel for each practitioner’s point of view as well as the point of view of the patient and the patient’s family as the clock ticks down and the patients are subjected to a number of procedures. The clinical information contained in this textbook is all in hyperlinks containing references to clinical skills open text sources or medical websites. I did find one broken link on an external medical resource.

The diseases presented are relevant and will remain so. Some of the links are directly related to the Canadian Medical system so they may not be applicable to those living in other regions. Clinical links may change over time but the text itself will remain relevant.

Each case study clearly presents clinical data as is it recorded in real time.

Each case study provides the point of view of several practitioners and the patient over several days. While each of the case studies covers different pathology they all follow this same format, several points of view and data points, over a number of days.

The case studies are divided by days and this was easy to navigate as a reader. It would be easy to assign one case study per body system in an Anatomy and Physiology course, or to divide them up into small segments for small in class teaching moments.

The topics are presented in an organized way showing clinical data over time and each case presents a large number of view points. For example, in the first case study, the patient is experiencing difficulty breathing. We follow her through several days from her entrance to the emergency room. We meet her X Ray Technicians, Doctor, Nurses, Medical Assistant, Porter, Physiotherapist, Respiratory therapist, and the Lab Technicians running her tests during her stay. Each practitioner paints the overall clinical picture to the reader.

I found the text easy to navigate. There were not any figures included in the text, only clinical data organized in charts. The figures were all accessible via hyperlink. Some figures within the textbook illustrating patient scans could have been helpful but I did not have trouble navigating the links to visualize the scans.

I did not see any grammatical errors in the text.

The patients in the text are a variety of ages and have a variety of family arrangements but there is not much diversity among the patients. Our seven patients in the eight case studies are mostly white and all cis gendered.

Some of the case studies, for example the heart failure study, show clinical data before and after drug treatments so the students can get a feel for mechanism in physiological action. I also liked that the case studies included diet and lifestyle advice for the patients rather than solely emphasizing these pharmacological interventions. Overall, I enjoyed reading through these case studies and I plan to utilize them in my Anatomy and Physiology courses.

Reviewed by Richard Tarpey, Assistant Professor, Middle Tennessee State University on 5/11/21

As a case study book, there is no index or glossary. However, medical and technical terms provide a useful link to definitions and explanations that will prove useful to students unfamiliar with the terms. The information provided is appropriate for entry-level health care students. The book includes important health problems, but I would like to see coverage of at least one more chronic/lifestyle issue such as diabetes. The book covers adult issues only.

Content is accurate without bias

The content of the book is relevant and up-to-date. It addresses conditions that are prevalent in today's population among adults. There are no pediatric cases, but this does not significantly detract from the usefulness of the text. The format of the book lends to easy updating of data or information.

The book is written with clarity and is easy to read. The writing style is accessible and technical terminology is explained with links to more information.

Consistency is present. Lack of consistency is typically a problem with case study texts, but this book is consistent with presentation, format, and terminology throughout each of the eight cases.

The book has high modularity. Each of the case studies can be used independently from the others providing flexibility. Additionally, each case study can be partitioned for specific learning objectives based on the learning objectives of the course or module.

The book is well organized, presenting students conceptually with differing patient flow patterns through a hospital. The patient information provided at the beginning of each case is a wonderful mechanism for providing personal context for the students as they consider the issues. Many case studies focus on the problem and the organization without students getting a patient's perspective. The patient perspective is well represented in these cases.

The navigation through the cases is good. There are some terminology and procedure hyperlinks within the cases that do not work when accessed. This is troubling if you intend to use the text for entry-level health care students since many of these links are critical for a full understanding of the case.

There are some non-US variants of spelling and a few grammatical errors, but these do not detract from the content of the messages of each case.

The book is inclusive of differing backgrounds and perspectives. No insensitive or offensive references were found.

I like this text for its application flexibility. The book is useful for non-clinical healthcare management students to introduce various healthcare-related concepts and terminology. The content is also helpful for the identification of healthcare administration managerial issues for students to consider. The book has many applications.

Reviewed by Paula Baldwin, Associate Professor/Communication Studies, Western Oregon University on 5/10/21

The different case studies fall on a range, from crisis care to chronic illness care. read more

The different case studies fall on a range, from crisis care to chronic illness care.

The contents seems to be written as they occurred to represent the most complete picture of each medical event's occurence.

These case studies are from the Canadian medical system, but that does not interfere with it's applicability.

It is written for a medical audience, so the terminology is mostly formal and technical.

Some cases are shorter than others and some go in more depth, but it is not problematic.

The eight separate case studies is the perfect size for a class in the quarter system. You could combine this with other texts, videos or learning modalities, or use it alone.

As this is a case studies book, there is not a need for a logical progression in presentation of topics.

No problems in terms of interface.

I have not seen any grammatical errors.

I did not see anything that was culturally insensitive.

I used this in a Health Communication class and it has been extraordinarily successful. My studies are analyzing the messaging for the good, the bad, and the questionable. The case studies are widely varied and it gives the class insights into hospital experiences, both front and back stage, that they would not normally be able to examine. I believe that because it is based real-life medical incidents, my students are finding the material highly engaging.

Reviewed by Marlena Isaac, Instructor, Aiken Technical College on 4/23/21

This text is great to walk through patient care with entry level healthcare students. The students are able to take in the information, digest it, then provide suggestions to how they would facilitate patient healing. Then when they are faced with... read more

The case studies provided accurate information that relates to the named disease.

It is relevant to health care studies and the development of critical thinking.

Cases are straightforward with great clinical information.

Clinical information is provided concisely.

Appropriate for clinical case study.

Presented to facilitate information gathering.

Takes a while to navigate in the browser.

Cultural Relevance rating: 1

Text lacks adequate representation of minorities.

Reviewed by Kim Garcia, Lecturer III, University of Texas Rio Grande Valley on 11/16/20

The book has 8 case studies, so obviously does not cover the whole of medicine, but the cases provided are descriptive and well developed. Cases are presented at different levels of difficulty, making the cases appropriate for students at different levels of clinical knowledge. The human element of both patient and health care provider is well captured. The cases are presented with a focus on interprofessional interaction and collaboration, more so than teaching medical content.

Content is accurate and un-biased. No errors noted. Most diagnostic and treatment information is general so it will remain relevant over time. The content of these cases is more appropriate for teaching interprofessional collaboration and less so for teaching the medical care for each diagnosis.

The content is relevant to a variety of different types of health care providers (nurses, radiologic technicians, medical laboratory personnel, etc) and due to the general nature of the cases, will remain relevant over time.

Easy to read. Clear headings are provided for sections of each case study and these section headings clearly tell when time has passed or setting has changed. Enough description is provided to help set the scene for each part of the case. Much of the text is written in the form of dialogue involving patient, family and health care providers, making it easy to adapt for role play. Medical jargon is limited and links for medical terms are provided to other resources that expound on medical terms used.

The text is consistent in structure of each case. Learning objectives are provided. Cases generally start with the patient at home and move with the patient through admission, testing and treatment, using a variety of healthcare services and encountering a variety of personnel.

The text is modular. Cases could be used individually within a unit on the given disease process or relevant sections of a case could be used to illustrate a specific point. The appendix is helpful in locating content specific to a certain diagnosis or a certain type of health care provider.

Each case follows a patient in a logical, chronologic fashion. A clear table of contents and appendix are provided which allows the user to quickly locate desired content. It would be helpful if the items in the table of contents and appendix were linked to the corresponding section of the text.

The hyperlinks to content outside this book work, however using the back arrow on your browser returns you to the front page of the book instead of to the point at which you left the text. I would prefer it if the hyperlinks opened in a new window or tab so closing that window or tab would leave you back where you left the text.

No grammatical errors were noted.

The text is culturally inclusive and appropriate. Characters, both patients and care givers are of a variety of races, ethnicities, ages and backgrounds.

I enjoyed reading the cases and reviewing this text. I can think of several ways in which I will use this content.

Reviewed by Raihan Khan, Instructor/Assistant Professor, James Madison University on 11/3/20

The book contains several important health issues, however still missing some chronic health issues that the students should learn before they join the workforce, such as diabetes-related health issues suffered by the patients. read more

The health information contained in the textbook is mostly accurate.

I think the book is written focusing on the current culture and health issues faced by the patients. To keep the book relevant in the future, the contexts especially the culture/lifestyle/health care modalities, etc. would need to be updated regularly.

The language is pretty simple, clear, and easy to read.

There is no complaint about consistency. One of the main issues of writing a book, consistency was well managed by the authors.

The book is easy to explore based on how easy the setup is. Students can browse to the specific section that they want to read without much hassle of finding the correct information.

The organization is simple but effective. The authors organized the book based on what can happen in a patient's life and what possible scenarios students should learn about the disease. From that perspective, the book does a good job.

The interface is easy and simple to navigate. Some links to external sources might need to be updated regularly since those links are subject to change that is beyond the author's control. It's frustrating for the reader when the external link shows no information.

The book is free of any major language and grammatical errors.

The book might do a little better in cultural competency. e.g. Last name Singh is mainly for Sikh people. In the text Harj and Priya Singh are Muslim. the authors can consult colleagues who are more familiar with those cultures and revise some cultural aspects of the cases mentioned in the book.

The book is a nice addition to the open textbook world. Hope to see more health issues covered by the book.

Reviewed by Ryan Sheryl, Assistant Professor, California State University, Dominguez Hills on 7/16/20

This text contains 8 medical case studies that reflect best practices at the time of publication. The text identifies 5 overarching learning objectives: interprofessional collaboration, client centered care, evidence-based practice, quality improvement, and informatics. While the case studies do not cover all medical conditions or bodily systems, the book is thorough in conveying details of various patients and medical team members in a hospital environment. Rather than an index or glossary at the end of the text, it contains links to outside websites for more information on medical tests and terms referenced in the cases.

The content provided is reflective of best practices in patient care, interdisciplinary collaboration, and communication at the time of publication. It is specifically accurate for the context of hospitals in Canada. The links provided throughout the text have the potential to supplement with up-to-date descriptions and definitions, however, many of them are broken (see notes in Interface section).

The content of the case studies reflects the increasingly complex landscape of healthcare, including a variety of conditions, ages, and personal situations of the clients and care providers. The text will require frequent updating due to the rapidly changing landscape of society and best practices in client care. For example, a future version may include inclusive practices with transgender clients, or address ways medical racism implicitly impacts client care (see notes in Cultural Relevance section).

The text is written clearly and presents thorough, realistic details about working and being treated in an acute hospital context.

The text is very straightforward. It is consistent in its structure and flow. It uses consistent terminology and follows a structured framework throughout.

Being a series of 8 separate case studies, this text is easily and readily divisible into smaller sections. The text was designed to be taken apart and used piece by piece in order to serve various learning contexts. The parts of each case study can also be used independently of each other to facilitate problem solving.

The topics in the case studies are presented clearly. The structure of each of the case studies proceeds in a similar fashion. All of the cases are set within the same hospital so the hospital personnel and service providers reappear across the cases, giving a textured portrayal of the experiences of the various service providers. The cases can be used individually, or one service provider can be studied across the various studies.

The text is very straightforward, without complex charts or images that could become distorted. Many of the embedded links are broken and require updating. The links that do work are a very useful way to define and expand upon medical terms used in the case studies.

Grammatical errors are minimal and do not distract from the flow of the text. In one instance the last name Singh is spelled Sing, and one patient named Fred in the text is referred to as Frank in the appendix.

The cases all show examples of health care personnel providing compassionate, client-centered care, and there is no overt discrimination portrayed. Two of the clients are in same-sex marriages and these are shown positively. It is notable, however, that the two cases presenting people of color contain more negative characteristics than the other six cases portraying Caucasian people. The people of color are the only two examples of clients who smoke regularly. In addition, the Indian client drinks and is overweight, while the First Nations client is the only one in the text to have a terminal diagnosis. The Indian client is identified as being Punjabi and attending a mosque, although there are only 2% Muslims in the Punjab province of India. Also, the last name Singh generally indicates a person who is a Hindu or Sikh, not Muslim.

Reviewed by Monica LeJeune, RN Instructor, LSUE on 4/24/20

Has comprehensive unfolding case studies that guide the reader to recognize and manage the scenario presented. Assists in critical thinking process. read more

Has comprehensive unfolding case studies that guide the reader to recognize and manage the scenario presented. Assists in critical thinking process.

Accurately presents health scenarios with real life assessment techniques and patient outcomes.

Relevant to nursing practice.

Clearly written and easily understood.

Consistent with healthcare terminology and framework

Has a good reading flow.

Topics presented in logical fashion

Easy to read.

No grammatical errors noted.

Text is not culturally insensitive or offensive.

Good book to have to teach nursing students.

Reviewed by april jarrell, associate professor, J. Sargeant Reynolds Community College on 1/7/20

The text is a great case study tool that is appropriate for nursing school instructors to use in aiding students to learn the nursing process. read more

The text is a great case study tool that is appropriate for nursing school instructors to use in aiding students to learn the nursing process.

The content is accurate and evidence based. There is no bias noted

The content in the text is relevant, up to date for nursing students. It will be easy to update content as needed because the framework allows for addition to the content.

The text is clear and easy to understand.

Framework and terminology is consistent throughout the text; the case study is a continual and takes the student on a journey with the patient. Great for learning!

The case studies can be easily divided into smaller sections to allow for discussions, and weekly studies.

The text and content progress in a logical, clear fashion allowing for progression of learning.

No interface issues noted with this text.

No grammatical errors noted in the text.

No racial or culture insensitivity were noted in the text.

I would recommend this text be used in nursing schools. The use of case studies are helpful for students to learn and practice the nursing process.

Reviewed by Lisa Underwood, Practical Nursing Instructor, NTCC on 12/3/19

The text provides eight comprehensive case studies that showcase the different viewpoints of the many roles involved in patient care. It encompasses the most common seen diagnoses seen across healthcare today. Each case study comes with its own set of learning objectives that can be tweaked to fit several allied health courses. Although the case studies are designed around the Canadian Healthcare System, they are quite easily adaptable to fit most any modern, developed healthcare system.

Content Accuracy rating: 3

Overall, the text is quite accurate. There is one significant error that needs to be addressed. It is located in the DVT case study. In the study, a popliteal artery clot is mislabeled as a DVT. DVTs are located in veins, not in arteries. That said, the case study on the whole is quite good. This case study could be used as a learning tool in the classroom for discussion purposes or as a way to test student understanding of DVTs, on example might be, "Can they spot the error?"

At this time, all of the case studies within the text are current. Healthcare is an ever evolving field that rests on the best evidence based practice. Keeping that in mind, educators can easily adapt the studies as the newest evidence emerges and changes practice in healthcare.

All of the case studies are well written and easy to understand. The text includes several hyperlinks and it also highlights certain medical terminology to prompt readers as a way to enhance their learning experience.

Across the text, the language, style, and format of the case studies are completely consistent.

The text is divided into eight separate case studies. Each case study may be used independently of the others. All case studies are further broken down as the focus patient passes through each aspect of their healthcare system. The text's modularity makes it possible to use a case study as individual work, group projects, class discussions, homework or in a simulation lab.

The case studies and the diagnoses that they cover are presented in such a way that educators and allied health students can easily follow and comprehend.

The book in itself is free of any image distortion and it prints nicely. The text is offered in a variety of digital formats. As noted in the above reviews, some of the hyperlinks have navigational issues. When the reader attempts to access them, a "page not found" message is received.

There were minimal grammatical errors. Some of which may be traced back to the differences in our spelling.

The text is culturally relevant in that it includes patients from many different backgrounds and ethnicities. This allows educators and students to explore cultural relevance and sensitivity needs across all areas in healthcare. I do not believe that the text was in any way insensitive or offensive to the reader.

By using the case studies, it may be possible to have an open dialogue about the differences noted in healthcare systems. Students will have the ability to compare and contrast the Canadian healthcare system with their own. I also firmly believe that by using these case studies, students can improve their critical thinking skills. These case studies help them to "put it all together".

Reviewed by Melanie McGrath, Associate Professor, TRAILS on 11/29/19

The text covered some of the most common conditions seen by healthcare providers in a hospital setting, which forms a solid general base for the discussions based on each case. read more

The text covered some of the most common conditions seen by healthcare providers in a hospital setting, which forms a solid general base for the discussions based on each case.

I saw no areas of inaccuracy

As in all healthcare texts, treatments and/or tests will change frequently. However, everything is currently up-to-date thus it should be a good reference for several years.

Each case is written so that any level of healthcare student would understand. Hyperlinks in the text is also very helpful.

All of the cases are written in a similar fashion.

Although not structured as a typical text, each case is easily assigned as a stand-alone.

Each case is organized clearly in an appropriate manner.

I did not see any issues.

I did not see any grammatical errors

The text seemed appropriately inclusive. There are no pediatric cases and no cases of intellectually-impaired patients, but those types of cases introduce more advanced problem-solving which perhaps exceed the scope of the text. May be a good addition to the text.

I found this text to be an excellent resource for healthcare students in a variety of fields. It would be best utilized in inter professional courses to help guide discussion.

Reviewed by Lynne Umbarger, Clinical Assistant Professor, Occupational Therapy, Emory and Henry College on 11/26/19

While the book does not cover every scenario, the ones in the book are quite common and troublesome for inexperienced allied health students. The information in the book is thorough enough, and I have found the cases easy to modify for educational purposes. The material was easily understood by the students but challenging enough for classroom discussion. There are no mentions in the book about occupational therapy, but it is easy enough to add a couple words and make inclusion simple.

Very nice lab values are provided in the case study, making it more realistic for students.

These case studies focus on commonly encountered diagnoses for allied health and nursing students. They are comprehensive, realistic, and easily understood. The only difference is that the hospital in one case allows the patient's dog to visit in the room (highly unusual in US hospitals).

The material is easily understood by allied health students. The cases have links to additional learning materials for concepts that may be less familiar or should be explored further in a particular health field.

The language used in the book is consistent between cases. The framework is the same with each case which makes it easier to locate areas that would be of interest to a particular allied health profession.

The case studies are comprehensive but well-organized. They are short enough to be useful for class discussion or a full-blown assignment. The students seem to understand the material and have not expressed that any concepts or details were missing.

Each case is set up like the other cases. There are learning objectives at the beginning of each case to facilitate using the case, and it is easy enough to pull out material to develop useful activities and assignments.

There is a quick chart in the Appendix to allow the reader to determine the professions involved in each case as well as the pertinent settings and diagnoses for each case study. The contents are easy to access even while reading the book.

As a person who attends carefully to grammar, I found no errors in all of the material I read in this book.

There are a greater number of people of different ethnicities, socioeconomic status, ages, and genders to make this a very useful book. With each case, I could easily picture the person in the case. This book appears to be Canadian and more inclusive than most American books.

I was able to use this book the first time I accessed it to develop a classroom activity for first-year occupational therapy students and a more comprehensive activity for second-year students. I really appreciate the links to a multitude of terminology and medical lab values/issues for each case. I will keep using this book.

Reviewed by Cindy Krentz, Assistant Professor, Metropolitan State University of Denver on 6/15/19

The book covers eight case studies of common inpatient or emergency department scenarios. I appreciated that they had written out the learning objectives. I liked that the patient was described before the case was started, giving some understanding of the patient's background. I think it could benefit from having a glossary. I liked how the authors included the vital signs in an easily readable bar. I would have liked to see the labs also highlighted like this. I also felt that it would have been good written in a 'what would you do next?' type of case study.

The book is very accurate in language, what tests would be prudent to run and in the day in the life of the hospital in all cases. One inaccuracy is that the authors called a popliteal artery clot a DVT. The rest of the DVT case study was great, though, but the one mistake should be changed.

The book is up to date for now, but as tests become obsolete and new equipment is routinely used, the book ( like any other health textbook) will need to be updated. It would be easy to change, however. All that would have to happen is that the authors go in and change out the test to whatever newer, evidence-based test is being utilized.

The text is written clearly and easy to understand from a student's perspective. There is not too much technical jargon, and it is pretty universal when used- for example DVT for Deep Vein Thrombosis.

The book is consistent in language and how it is broken down into case studies. The same format is used for highlighting vital signs throughout the different case studies. It's great that the reader does not have to read the book in a linear fashion. Each case study can be read without needing to read the others.

The text is broken down into eight case studies, and within the case studies is broken down into days. It is consistent and shows how the patient can pass through the different hospital departments (from the ER to the unit, to surgery, to home) in a realistic manner. The instructor could use one or more of the case studies as (s)he sees fit.

The topics are eight different case studies- and are presented very clearly and organized well. Each one is broken down into how the patient goes through the system. The text is easy to follow and logical.

The interface has some problems with the highlighted blue links. Some of them did not work and I got a 'page not found' message. That can be frustrating for the reader. I'm wondering if a glossary could be utilized (instead of the links) to explain what some of these links are supposed to explain.

I found two or three typos, I don't think they were grammatical errors. In one case I think the Canadian spelling and the United States spelling of the word are just different.

This is a very culturally competent book. In today's world, however, one more type of background that would merit delving into is the trans-gender, GLBTQI person. I was glad that there were no stereotypes.

I enjoyed reading the text. It was interesting and relevant to today's nursing student. Since we are becoming more interprofessional, I liked that we saw what the phlebotomist and other ancillary personnel (mostly different technicians) did. I think that it could become even more interdisciplinary so colleges and universities could have more interprofessional education- courses or simulations- with the addition of the nurse using social work, nutrition, or other professional health care majors.

Reviewed by Catherine J. Grott, Interim Director, Health Administration Program, TRAILS on 5/5/19

The book is comprehensive but is specifically written for healthcare workers practicing in Canada. The title of the book should reflect this. read more

The book is comprehensive but is specifically written for healthcare workers practicing in Canada. The title of the book should reflect this.

The book is accurate, however it has numerous broken online links.

Relevance/Longevity rating: 3

The content is very relevant, but some links are out-dated. For example, WHO Guidelines for Safe Surgery 2009 (p. 186) should be updated.

The book is written in clear and concise language. The side stories about the healthcare workers make the text interesting.

The book is consistent in terms of terminology and framework. Some terms that are emphasized in one case study are not emphasized (with online links) in the other case studies. All of the case studies should have the same words linked to online definitions.

Modularity rating: 3

The book can easily be parsed out if necessary. However, the way the case studies have been written, it's evident that different authors contributed singularly to each case study.

The organization and flow are good.

Interface rating: 1

There are numerous broken online links and "pages not found."

The grammar and punctuation are correct. There are two errors detected: p. 120 a space between the word "heart" and the comma; also a period is needed after Dr (p. 113).

I'm not quite sure that the social worker (p. 119) should comment that the patient and partner are "very normal people."

There are roughly 25 broken online links or "pages not found." The BC & Canadian Guidelines (p. 198) could also include a link to US guidelines to make the text more universal . The basilar crackles (p. 166) is very good. Text could be used compare US and Canadian healthcare. Text could be enhanced to teach "soft skills" and interdepartmental communication skills in healthcare.

Reviewed by Lindsey Henry, Practical Nursing Instructor, Fletcher on 5/1/19

I really appreciated how in the introduction, five learning objectives were identified for students. These objectives are paramount in nursing care and they are each spelled out for the learner. Each Case study also has its own learning... read more

As a seasoned nurse, I believe that the content regarding pathophysiology and treatments used in the case studies were accurate. I really appreciated how many of the treatments were also explained and rationales were given, which can be very helpful to facilitate effective learning for a nursing student or novice nurse.

The case studies are up to date and correlate with the current time period. They are easily understood.

I really loved how several important medical terms, including specific treatments were highlighted to alert the reader. Many interventions performed were also explained further, which is great to enhance learning for the nursing student or novice nurse. Also, with each scenario, a background and history of the patient is depicted, as well as the perspectives of the patient, patients family member, and the primary nurse. This really helps to give the reader a full picture of the day in the life of a nurse or a patient, and also better facilitates the learning process of the reader.

These case studies are consistent. They begin with report, the patient background or updates on subsequent days, and follow the patients all the way through discharge. Once again, I really appreciate how this book describes most if not all aspects of patient care on a day to day basis.

Each case study is separated into days. While they can be divided to be assigned at different points within the course, they also build on each other. They show trends in vital signs, what happens when a patient deteriorates, what happens when they get better and go home. Showing the entire process from ER admit to discharge is really helpful to enhance the students learning experience.

The topics are all presented very similarly and very clearly. The way that the scenarios are explained could even be understood by a non-nursing student as well. The case studies are very clear and very thorough.

The book is very easy to navigate, prints well on paper, and is not distorted or confusing.

I did not see any grammatical errors.

Each case study involves a different type of patient. These differences include race, gender, sexual orientation and medical backgrounds. I do not feel the text was offensive to the reader.

I teach practical nursing students and after reading this book, I am looking forward to implementing it in my classroom. Great read for nursing students!

Reviewed by Leah Jolly, Instructor, Clinical Coordinator, Oregon Institute of Technology on 4/10/19

Good variety of cases and pathologies covered. read more

Good variety of cases and pathologies covered.

Content Accuracy rating: 2

Some examples and scenarios are not completely accurate. For example in the DVT case, the sonographer found thrombus in the "popliteal artery", which according to the book indicated presence of DVT. However in DVT, thrombus is located in the vein, not the artery. The patient would also have much different symptoms if located in the artery. Perhaps some of these inaccuracies are just typos, but in real-life situations this simple mistake can make a world of difference in the patient's course of treatment and outcomes.

Good examples of interprofessional collaboration. If only it worked this way on an every day basis!

Clear and easy to read for those with knowledge of medical terminology.

Good consistency overall.

Broken up well.

Topics are clear and logical.

Would be nice to simply click through to the next page, rather than going through the table of contents each time.

Minor typos/grammatical errors.

No offensive or insensitive materials observed.

Reviewed by Alex Sargsyan, Doctor of Nursing Practice/Assistant Professor , East Tennessee State University on 10/8/18

Because of the case study character of the book it does not have index or glossary. However it has summary for each health case study outlining key elements discussed in each case study. read more

Because of the case study character of the book it does not have index or glossary. However it has summary for each health case study outlining key elements discussed in each case study.

Overall the book is accurately depicting the clinical environment. There are numerous references to external sites. While most of them are correct, some of them are not working. For example Homan’s test link is not working "404 error"

Book is relevant in its current version and can be used in undergraduate and graduate classes. That said, the longevity of the book may be limited because of the character of the clinical education. Clinical guidelines change constantly and it may require a major update of the content.

Cases are written very clearly and have realistic description of an inpatient setting.

The book is easy to read and consistent in the language in all eight cases.

The cases are very well written. Each case is subdivided into logical segments. The segments reflect different setting where the patient is being seen. There is a flow and transition between the settings.

Book has eight distinct cases. This is a great format for a book that presents distinct clinical issues. This will allow the students to have immersive experiences and gain better understanding of the healthcare environment.

Book is offered in many different formats. Besides the issues with the links mentioned above, overall navigation of the book content is very smooth.

Book is very well written and has no grammatical errors.

Book is culturally relevant. Patients in the case studies come different cultures and represent diverse ethnicities.

Reviewed by Justin Berry, Physical Therapist Assistant Program Director, Northland Community and Technical College, East Grand Forks, MN on 8/2/18

This text provides eight patient case studies from a variety of diagnoses, which can be utilized by healthcare students from multiple disciplines. The cases are comprehensive and can be helpful for students to determine professional roles, interprofessional roles, when to initiate communication with other healthcare practitioners due to a change in patient status, and treatment ideas. Some additional patient information, such as lab values, would have been beneficial to include.

Case study information is accurate and unbiased.

Content is up to date. The case studies are written in a way so that they will not be obsolete soon, even with changes in healthcare.

The case studies are well written, and can be utilized for a variety of classroom assignments, discussions, and projects. Some additional lab value information for each patient would have been a nice addition.

The case studies are consistently organized to make it easy for the reader to determine the framework.

The text is broken up into eight different case studies for various patient diagnoses. This design makes it highly modular, and would be easy to assign at different points of a course.

The flow of the topics are presented consistently in a logical manner. Each case study follows a patient chronologically, making it easy to determine changes in patient status and treatment options.

The text is free of interface issues, with no distortion of images or charts.

The text is not culturally insensitive or offensive in any way. Patients are represented from a variety of races, ethnicities, and backgrounds

This book would be a good addition for many different health programs.

Reviewed by Ann Bell-Pfeifer, Instructor/Program Director, Minnesota State Community and Technical College on 5/21/18

The book gives a comprehensive overview of many types of cases for patient conditions. Emergency Room patients may arrive with COPD, heart failure, sepsis, pneumonia, or as motor vehicle accident victims. It is directed towards nurses, medical laboratory technologists, medical radiology technologists, and respiratory therapists and their roles in caring for patients. Most of the overview is accurate. One suggestion is to provide an embedded radiologist interpretation of the exams which are performed which lead to the patients diagnosis.

Overall the book is accurate. Would like to see updates related to the addition of direct radiography technology which is commonly used in the hospital setting.

Many aspects of medicine will remain constant. The case studies seem fairly accurate and may be relevant for up to 3 years. Since technology changes so quickly in medicine, the CT and x-ray components may need minor updates within a few years.

The book clarity is excellent.

The case stories are consistent with each scenario. It is easy to follow the structure and learn from the content.

The book is quite modular. It is easy to break it up into cases and utilize them individually and sequentially.

The cases are listed by disease process and follow a logical flow through each condition. They are easy to follow as they have the same format from the beginning to the end of each case.

The interface seems seamless. Hyperlinks are inserted which provide descriptions and references to medical procedures and in depth definitions.

The book is free of most grammatical errors. There is a place where a few words do not fit the sentence structure and could be a typo.

The book included all types of relationships and ethnic backgrounds. One type which could be added is a transgender patient.

I think the book was quite useful for a variety of health care professionals. The authors did an excellent job of integrating patient cases which could be applied to the health care setting. The stories seemed real and relevant. This book could be used to teach health care professionals about integrated care within the emergency department.

Reviewed by Shelley Wolfe, Assistant Professor, Winona State University on 5/21/18

This text is comprised of comprehensive, detailed case studies that provide the reader with multiple character views throughout a patient’s encounter with the health care system. The Table of Contents accurately reflected the content. It should be noted that the authors include a statement that conveys that this text is not like traditional textbooks and is not meant to be read in a linear fashion. This allows the educator more flexibility to use the text as a supplement to enhance learning opportunities.

The content of the text appears accurate and unbiased. The “five overarching learning objectives” provide a clear aim of the text and the educator is able to glean how these objectives are captured into each of the case studies. While written for the Canadian healthcare system, this text is easily adaptable to the American healthcare system.

Overall, the content is up-to-date and the case studies provide a variety of uses that promote longevity of the text. However, not all of the blue font links (if using the digital PDF version) were still in working order. I encountered links that led to error pages or outdated “page not found” websites. While the links can be helpful, continued maintenance of these links could prove time-consuming.

I found the text easy to read and understand. I enjoyed that the viewpoints of all the different roles (patient, nurse, lab personnel, etc.) were articulated well and allowed the reader to connect and gain appreciation of the entire healthcare team. Medical jargon was noted to be appropriate for the intended audience of this text.

The terminology and organization of this text is consistent.

The text is divided into 8 case studies that follow a similar organizational structure. The case studies can further be divided to focus on individual learning objectives. For example, the case studies could be looked at as a whole for discussing communication or could be broken down into segments to focus on disease risk factors.

The case studies in this text follow a similar organizational structure and are consistent in their presentation. The flow of individual case studies is excellent and sets the reader on a clear path. As noted previously, this text is not meant to be read in a linear fashion.

This text is available in many different forms. I chose to review the text in the digital PDF version in order to use the embedded links. I did not encounter significant interface issues and did not find any images or features that would distract or confuse a reader.

No significant grammatical errors were noted.

The case studies in this text included patients and healthcare workers from a variety of backgrounds. Educators and students will benefit from expanding the case studies to include discussions and other learning opportunities to help develop culturally-sensitive healthcare providers.

I found the case studies to be very detailed, yet written in a way in which they could be used in various manners. The authors note a variety of ways in which the case studies could be employed with students; however, I feel the authors could also include that the case studies could be used as a basis for simulated clinical experiences. The case studies in this text would be an excellent tool for developing interprofessional communication and collaboration skills in a variety healthcare students.

Reviewed by Darline Foltz, Assistant Professor, University of Cincinnati - Clermont College on 3/27/18

This book covers all areas listed in the Table of Contents. In addition to the detailed patient case studies, there is a helpful section of "How to Use this Resource". I would like to note that this resource "aligns with the open textbooks... read more

The book appears to be accurate. Although one of the learning outcomes is as follows: "Demonstrate an understanding of the Canadian healthcare delivery system.", I did not find anything that is ONLY specific to the Canadian healthcare delivery system other than some of the terminology, i.e. "porter" instead of "transporter" and a few french words. I found this to make the book more interesting for students rather than deter from it. These are patient case studies that are relevant in any country.

The content is up-to-date. Changes in medical science may occur, i.e. a different test, to treat a diagnosis that is included in one or more of the case studies, however, it would be easy and straightforward to implement these changes.

This book is written in lucid, accessible prose. The technical/medical terminology that is used is appropriate for medical and allied health professionals. Something that would improve this text would to provide a glossary of terms for the terms in blue font.

This book is consistent with current medical terminology

This text is easily divided into each of the 6 case studies. The case studies can be used singly according to the body system being addressed or studied.

Because this text is a collection of case studies, flow doesn't pertain, however the organization and structure of the case studies are excellent as they are clear and easy to read.

There are no distractions in this text that would distract or confuse the reader.

I did not identify any grammatical errors.

This text is not culturally insensitive or offensive in any way and uses patients and healthcare workers that are of a variety of races, ethnicities and backgrounds.

I believe that this text would not only be useful to students enrolled in healthcare professions involved in direct patient care but would also be useful to students in supporting healthcare disciplines such as health information technology and management, medical billing and coding, etc.

Introduction

Case Study #1: Chronic Obstructive Pulmonary Disease (COPD)

Learning Objectives
Patient: Erin Johns
Emergency Room

Case Study #2: Pneumonia

Day 0: Emergency Room
Day 1: Emergency Room
Day 1: Medical Ward
Day 2: Medical Ward
Day 3: Medical Ward
Day 4: Medical Ward

Case Study #3: Unstable Angina (UA)

Patient: Harj Singh

Case Study #4: Heart Failure (HF)

Patient: Meryl Smith
In the Supermarket
Day 0: Medical Ward

Case Study #5: Motor Vehicle Collision (MVC)

Patient: Aaron Knoll
Crash Scene
Operating Room
Post Anaesthesia Care Unit (PACU)
Surgical Ward

Case Study #6: Sepsis

Patient: George Thomas
Sleepy Hollow Care Facility

Case Study #7: Colon Cancer

Patient: Fred Johnson
Two Months Ago
Pre-Surgery Admission

Case Study #8: Deep Vein Thrombosis (DVT)

Patient: Jamie Douglas

Appendix: Overview About the Authors

Ancillary Material

About the book.

Health Case Studies is composed of eight separate health case studies. Each case study includes the patient narrative or story that models the best practice (at the time of publishing) in healthcare settings. Associated with each case is a set of specific learning objectives to support learning and facilitate educational strategies and evaluation.

The case studies can be used online in a learning management system, in a classroom discussion, in a printed course pack or as part of a textbook created by the instructor. This flexibility is intentional and allows the educator to choose how best to convey the concepts presented in each case to the learner.

Because these case studies were primarily developed for an electronic healthcare system, they are based predominantly in an acute healthcare setting. Educators can augment each case study to include primary healthcare settings, outpatient clinics, assisted living environments, and other contexts as relevant.

About the Contributors

Glynda Rees teaches at the British Columbia Institute of Technology (BCIT) in Vancouver, British Columbia. She completed her MSN at the University of British Columbia with a focus on education and health informatics, and her BSN at the University of Cape Town in South Africa. Glynda has many years of national and international clinical experience in critical care units in South Africa, the UK, and the USA. Her teaching background has focused on clinical education, problem-based learning, clinical techniques, and pharmacology.

Glynda‘s interests include the integration of health informatics in undergraduate education, open accessible education, and the impact of educational technologies on nursing students’ clinical judgment and decision making at the point of care to improve patient safety and quality of care.

Faculty member in the critical care nursing program at the British Columbia Institute of Technology (BCIT) since 2003, Rob has been a critical care nurse for over 25 years with 17 years practicing in a quaternary care intensive care unit. Rob is an experienced educator and supports student learning in the classroom, online, and in clinical areas. Rob’s Master of Education from Simon Fraser University is in educational technology and learning design. He is passionate about using technology to support learning for both faculty and students.

Part of Rob’s faculty position is dedicated to providing high fidelity simulation support for BCIT’s nursing specialties program along with championing innovative teaching and best practices for educational technology. He has championed the use of digital publishing and was the tech lead for Critical Care Nursing’s iPad Project which resulted in over 40 multi-touch interactive textbooks being created using Apple and other technologies.

Rob has successfully completed a number of specialist certifications in computer and network technologies. In 2015, he was awarded Apple Distinguished Educator for his innovation and passionate use of technology to support learning. In the past five years, he has presented and published abstracts on virtual simulation, high fidelity simulation, creating engaging classroom environments, and what the future holds for healthcare and education.

Janet Morrison is the Program Head of Occupational Health Nursing at the British Columbia Institute of Technology (BCIT) in Burnaby, British Columbia. She completed a PhD at Simon Fraser University, Faculty of Communication, Art and Technology, with a focus on health information technology. Her dissertation examined the effects of telehealth implementation in an occupational health nursing service. She has an MA in Adult Education from St. Francis Xavier University and an MA in Library and Information Studies from the University of British Columbia.

Janet’s research interests concern the intended and unintended impacts of health information technologies on healthcare students, faculty, and the healthcare workforce.

She is currently working with BCIT colleagues to study how an educational clinical information system can foster healthcare students’ perceptions of interprofessional roles.

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Teaching cases & active learning resources for public health education, case library.

The Harvard Chan Case Library is a collection of teaching cases with a public health focus, written by Harvard Chan faculty, case writers, and students, or in collaboration with other institutions and initiatives.

Use the filters at right to search the case library by subject, geography, health condition, and representation of diversity and identity to find cases to fit your teaching needs. Or browse the case collections below for our newest cases, cases available for free download, or cases with a focus on diversity.

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Many of our cases are available for sale through Harvard Business Publishing in the Harvard T.H. Chan case collection . Others are free to download through this website .

Cases in this collection may be used free of charge by Harvard Chan course instructors in their teaching. Contact Allison Bodznick , Harvard Chan Case Library administrator, for access.

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Atkinson, M.K. , 2023. Organizational Resilience and Change at UMass Memorial , Harvard Business Publishing: Harvard T.H. Chan School of Public Health. Available from Harvard Business Publishing Abstract The UMass Memorial Health Care (UMMHC or UMass) case is an examination of the impact of crisis or high uncertainty events on organizations. As a global pandemic unfolds, the case examines the ways in which UMMHC manages crisis and poses questions around organizational change and opportunity for growth after such major events. The case begins with a background of UMMHC, including problems the organization was up against before the pandemic, then transitions to the impact of crisis on UMMHC operations and its subsequent response, and concludes with challenges that the organization must grapple with in the months and years ahead. A crisis event can occur at any time for any organization. Organizational leaders must learn to manage stakeholders both inside and outside the organization throughout the duration of crisis and beyond. Additionally, organizational decision-makers must learn how to deal with existing weaknesses and problems the organization had before crisis took center stage, balancing those challenges with the need to respond to an emergency all the while not neglecting major existing problem points. This case is well-suited for courses on strategy determination and implementation, organizational behavior, and leadership.

The case describes the challenges facing Shlomit Schaal, MD, PhD, the newly appointed Chair of UMass Memorial Health Care’s Department of Ophthalmology. Dr. Schaal had come to UMass in Worcester, Massachusetts, in the summer of 2016 from the University of Louisville (KY) where she had a thriving clinical practice and active research lab, and was Director of the Retina Service. Before applying for the Chair position at UMass she had some initial concerns about the position but became fascinated by the opportunities it offered to grow a service that had historically been among the smallest and weakest programs in the UMass system and had experienced a rapid turnover in Chairs over the past few years. She also was excited to become one of a very small number of female Chairs of ophthalmology programs in the country.

Dr. Schaal began her new position with ambitious plans and her usual high level of energy, but immediately ran into resistance from the faculty and staff of the department. The case explores the steps she took, including implementing a LEAN approach in the department, and the leadership approaches she used to overcome that resistance and build support for the changes needed to grow and improve ophthalmology services at the medical center.

This case describes efforts to promote racial equity in healthcare financing from the perspective of one public health organization, Community Care Cooperative (C3). C3 is a Medicaid Accountable Care Organization–i.e., an organization set up to manage payment from Medicaid, a public health insurance option for low-income people. The case describes C3’s approach to addressing racial equity from two vantage points: first, its programmatic efforts to channel financing into community health centers that serve large proportions of Black, Indigenous, People of Color (BIPOC), and second, its efforts to address racial equity within its own internal operations (e.g., through altering hiring and promotion processes). The case can be used to help students understand structural issues pertaining to race in healthcare delivery and financing, to introduce students to the basics of payment systems in healthcare, and/or to highlight how organizations can work internally to address racial equity.

Kerrissey, M.J. & Kuznetsova, M. , 2022. Killing the Pager at ZSFG , Harvard Business Publishing: Harvard T.H. Chan School of Public Health case collection. Available from Harvard Business Publishing Abstract This case is about organizational change and technology. It follows the efforts of one physician as they try to move their department past using the pager, a device that persisted in American medicine despite having long been outdated by superior communication technology. The case reveals the complex organizational factors that have made this persistence possible, such as differing interdepartmental priorities, the perceived benefits of simple technology, and the potential drawbacks of applying typical continuous improvement approaches to technology change. Ultimately the physician in the case is not able to rid their department of the pager, despite pursuing a thorough continuous improvement effort and piloting a viable alternative; the case ends with the physician having an opportunity to try again and asks students to assess whether doing so is wise. The case can be used in class to help students apply the general concepts of organizational change to the particular context of technology, discuss the forces of stasis and change in medicine, and to familiarize students with the uses and limits of continuous improvement methods.

Yatsko, P. & Koh, H. , 2021. Dr. Joan Reede and the Embedding of Diversity, Equity, and Inclusion at Harvard Medical School , Harvard T.H. Chan School of Public Health case collection. Available from Harvard Business Publishing Abstract For more than 30 years, Dr. Joan Reede worked to increase the diversity of voices and viewpoints heard at Harvard Medical School (HMS) and at its affiliate teaching hospitals and institutes. Reede, HMS’s inaugural dean for Diversity and Community Partnership, as well as a professor and physician, conceived and launched more than 20 programs to improve the recruitment, retention, and promotion of individuals from racial and ethnic groups historically underrepresented in medicine (UiMs). These efforts have substantially diversified physician faculty at HMS and built pipelines for UiM talent into academic medicine and biosciences. Reede helped embed the promotion of diversity, equity, and inclusion (DEI) not only into Harvard Medical School’s mission and community values, but also into the DEI agenda in academic medicine nationally. To do so, she found allies and formed enduring coalitions based on shared ownership. She bootstrapped and hustled for resources when few readily existed. And she persuaded skeptics by building programs using data-driven approaches. She also overcame discriminatory behaviors and other obstacles synonymous with being Black and female in American society. Strong core values and sense of purpose were keys to her resilience, as well as to her leadership in the ongoing effort to give historically marginalized groups greater voice in medicine and science.

Cases Available for Free Download

Gordon, R. , 2014. Who Owns Your Story? , Harvard University: Global Health Education and Learning Incubator. Access online Abstract This case uses a role play simulation to illustrate ethical implications when research practices violate cultural taboos and norms. In Who Owns Your Story? the Trilanyi - a fictional Native American tribe based on a real community that is not identified or located in the case – is adversely affected by a high prevalence of diabetes. They ask a university professor with whom they have a close relationship to study their tribe, and they agree to give samples of their blood – which they consider sacred – for the study. Tribe members signed a consent form to participate but it was unclear whether they realized that the consent covered the university potentially using their blood for other possible research topics beyond diabetes. Ultimately, the study does not discover that the tribe has a genetic predisposition to diabetes. Years later, however, tribe members learn that their samples had also been used to study topics they considered objectionable. The case is based on true events between the Havasupai tribe and the University of Arizona which ultimately led to a legal suit that was settled out of court. In the case, students are asked to develop and simulate role play negotiations toward an acceptable resolution for all the parties involved.

Louis, Y.E., et al. , 2019. Resident Doctors on Strike in Haiti's Public Hospitals , Harvard University: Social Medicine Consortium. Download free of charge Abstract In 2016, resident physicians organized a strike at the State University Hospital of Haiti (HUEH) in the capital of Port-au-Prince that eventually spread to at least ten other public hospitals in the country, effectively paralyzing the health care system for several months. Through interviews with strike participants and other key stakeholders in the Haitian medical system, this case explores the ethical challenges of health care worker strikes and the far-reaching consequences of the Haitian strike on the nation’s provision of health care and training of health professionals. Teaching note available for faculty/instructors.

Weinberger, E. , 2017. Coloring the Narrative: How to Use Storytelling to Create Social Change in Skin Tone Ideals , Harvard T.H. Chan School of Public Health: Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED). Download free of charge Abstract Many millions of people around the world experience the pervasive, and often painful, societal messages of colorism, where lighter skin tones are asserted to be more attractive and to reflect greater affluence, power, education, and social status. Even in places where the destructive effects of colorism are fairly well understood, far less is known about the problem of skin-lightening (really, it’s “skin bleaching”) creams and lotions, and the health risks that consumers assume with these products. In this teaching case, the protagonists are two women who have recently immigrated to the United States from Nigeria and Thailand, both with a life-time of experience with these products like many of the women of their home countries. As the story unfolds, they struggle along with the rest of the characters to copy with the push and pull of community norms vs. commercial influences and the challenge of promoting community health in the face of many societal and corporate obstacles. How can the deeply ingrained messages of colorism be effectively confronted and transformed to advance social change without alienating the community members we may most want to reach? Teaching note and supplemental slides available for faculty/instructors .

Rossano, P. & Johnson, P. , 2015. Adrienne Germain: A Leader in Women's Health Rights , Harvard University: Global Health Education and Learning Incubator. Access online Abstract This case explores strategies for changing policy and attitudes at national and international levels through the lens of women’s health. Adrienne Germain: A Leader in Women’s Health Rights charts the career of Adrienne Germain, a leader in the field of women’s sexual and reproductive health and rights (SRHR). Germain successfully broadened and shifted the area of reproductive health to encompass SRHR. While the context of this case is women’s health, Germain’s strategies and choices would also interest those focused on generating lasting social change. The lessons students could learn from the use of this case in classroom discussion easily extend beyond women’s health to areas of social change, political advocacy, and the importance of judicious negotiation in health policy efforts.

This multimedia module includes three clinical case videos demonstrating a variety of geriatric patient circumstances. Participants will view each case with attention to the medical care provided, as well as the impact of the social determinants of health (SDOH) in each scenario. The provider, in each case, models how to integrate the SDOH into the care plan to optimize the patient’s health and functionality.

Facilitators who utilize this module will develop panels from local community and state agencies to follow each case. The panels serve to deepen the learning experience through discussion and linking the participants to local experts. This strengthens the participant’s ability to apply lessons learned from this module in the clinical community contexts they serve.

The learning objectives for this module are directly related to Healthy People 2020 with the core SDOH categories including: economic stability; social and community context; health and healthcare; neighborhood and built environment; and environmental conditions.

Focus on Diversity, Equity, and Inclusion

This teaching case study examines psychological trauma in a community context and the relevance, both positive and negative, of social determinants of health. Healthy People 2020 views people residing in communities with large-scale psychological trauma as an emerging issue in mental health and mental health disorders (Healthy People, 2016). The case study, which focuses on Newark, New Jersey, addresses three of the five key determinants of health: social and community context, health and health care, and neighborhood and built environment. The three key determinants are addressed using psychological trauma as an exemplar in the context of trauma-informed systems. The social and community context is addressed using concepts of social cohesion, civic participation, and discrimination. Access to health and health care are addressed with discussion of access to mental health and primary care services, health literacy, and the medical home model. Neighborhood and built environment are viewed through the lens of available government and NGO programs and resources to improve the physical environment with a focus on quality of housing, crime and violence, and environmental conditions. Upstream interventions designed to improve mental health and well-being that support trauma-informed systems are analyzed. The use of Newark as the case study setting allows a real-life exploration of each of these three key determinants of health.

This case study has four sections – introduction, case study, side bar, and vignettes. Learners should work through the case, access appropriate resources, and work in a team for successful completion.

Yatsko, P. & Koh, H. , 2017. Dr. Jim O'Connell, Managing Crisis, and Advocating for Boston's Chronically Homeless Community , Harvard Business Publishing: Harvard T.H. Chan School of Public Health case collection. Available from Harvard Business Publishing Abstract A deep sense of foreboding filled Dr. James O'Connell and his team at Boston Health Care for the Homeless (BHCHP) in October 2014. The Boston mayor's office had just condemned the 64-year-old bridge that provided the only passage to the island in Boston Harbor housing the city's largest homeless shelter. It did not have a long-term contingency shelter plan in place and the city's other shelters were full. With winter fast approaching, O'Connell, who had been serving Boston's homeless population for over a quarter century, feared some of the city's dispossessed would die on the streets from cold. BHCHP would be hard pressed to provide them the medical care they needed. To implement his solution-reopening the Boston Night Center-O'Connell had to overcome the disinterest of BHCHP's traditional allies in the homeless service provider community, who for a number of years had been channeling their energies away from sheltering toward permanent housing solutions. The Boston Night Center's reopening helped achieve an unprecedented feat for the City of Boston: Not a single homeless person died from the elements that winter, the harshest in the city's recorded history. O'Connell parlayed this achievement into city and state financial support for the Boston Night Center for the next several years. How did O'Connell work with stakeholders to accomplish his goal? What could he do to maintain financial support for the Boston Night Center and shelter programs in Boston more generally?

Al Kasir, A., Coles, E. & Siegrist, R. , 2019. Anchoring Health beyond Clinical Care: UMass Memorial Health Care’s Anchor Mission Project , Harvard Business Publishing: Harvard T.H. Chan School of Public Health case collection. Available from Harvard Business Publishing Abstract As the Chief Administrative Officer of UMass Memorial Health Care (UMMHC) and president of UMass Memorial (UMM) Community Hospitals, Douglas Brown had just received unanimous and enthusiastic approval to pursue his "Anchor Mission" project at UMMHC in Worcester, Massachusetts. He was extremely excited by the board's support, but also quite apprehensive about how to make the Anchor Mission a reality. Doug had spearheaded the Anchor Mission from its earliest exploratory efforts. The goal of the health system's Anchor Mission-an idea developed by the Democracy Collaborative, an economic think tank-was to address the social determinants of health in its community beyond the traditional approach of providing excellent clinical care. He had argued that UMMHC had an obligation as the largest employer and economic force in Central Massachusetts to consider the broader development of the community and to address non-clinical factors, like homelessness and social inequality that made people unhealthy. To achieve this goal, UMMHC's Anchor Mission would undertake three types of interventions: local hiring, local sourcing/purchasing, and place-based community investment projects. While the board's enthusiasm was palpable and inspiring, Doug knew that sustaining it would require concrete accomplishments and a positive return on any investments the health system made in the project. The approval was just the first step. Innovation and new ways of thinking would be necessary. The bureaucracy behind a multi-billion-dollar healthcare organization would need to change. Even the doctors and nurses would need to change! He knew that the project had enormous potential but would become even more daunting from here.

Yatsko, P. & Koh, H. , 2017. Dr. Jonathan Woodson, Military Health System Reform, and National Digital Health Strategy , Harvard Business Publishing: Harvard T.H. Chan School of Public Health case collection. Available from Harvard Business Publishing Abstract Dr. Jonathan Woodson faced more formidable challenges than most in his storied medical, public health, and military career, starting with multiple rotations in combat zones around the world. He subsequently took on ever more complicated assignments, including reforming the country’s bloated Military Health System (MHS) in his role as assistant secretary of defense for health affairs at the U.S. Department of Defense from 2010 to 2016. As the director of Boston University’s Institute for Health System Innovation and Policy starting in 2016, he devised a National Digital Health Strategy (NDHS) to harness the myriad disparate health care innovations taking place around the country, with the goal of making the U.S. health care system more efficient, patient-centered, safe, and equitable for all Americans. How did Woodson—who was also a major general in the U.S. Army Reserves and a skilled vascular surgeon—approach such complicated problems? In-depth research and analysis, careful stakeholder review, strategic coalition building, and clear, insightful communication were some of the critical leadership skills Woodson employed to achieve his missions.

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Browse our case library

In February 2015, technical staff reviewed the results from a jointly conducted study on malaria control. This study had major implications for malaria in Zambia—and elsewhere. The preliminary analysis strongly suggested that the study’s Mass Drug Administration (MDA) strategy was reducing the incidence of malaria disease. In addition, MDA seemed to be driving down the infection reservoir among asymptomatic people in the study area of the Southern Province of Zambia. Further analysis with mathematical models indicated that if the intervention was sustained so current trends continued, then the MDA strategy would make it possible to eliminate malaria in the Southern Province.

If malaria could be eliminated in one region of Zambia, that would provide new evidence and motivation to work towards elimination throughout the country, an ambitious goal. But it would not be easy to move from conducting one technical study in a single region to creating a national strategy for malaria elimination. The scientists realized that their new data and analyses—of malaria infections, mosquito populations, and community health worker activities—were not enough. A national malaria elimination effort would require mobilizing many partners, national and local leaders, and community members, and convincing them to get on board with this new approach.

Teaching note available for faculty/instructors .

Levin-Scherz, J. , 2021. Bank4’s New CHRO Confronts Health Care Costs , Harvard Business Publishing: Harvard T.H. Chan School of Public Health case collection. Available from Harvard Business Publishing Abstract This case explores the challenges facing a new Chief Human Resources Officer as she evaluates health insurance benefits at a financial services company with 100,000 employees. Bank4 faces increasing costs while its employees see rising out-of-pocket expenses. Students will participate in workgroups focusing on pharmacy, provider prices, benefit and plan design, or prevention and wellness to evaluate the different options to address rising health care costs.

Sirali, Y. & Bhabha, J. , 2016. Turkey’s Child Protection Crisis and the Mother Child Education Foundation (Anne Çocuk Eğitim Vakfı—AÇEV), Parts A & B , Harvard Business Publishing: Harvard T.H. Chan School of Public Health case collection. Available from Harvard Business Publishing Abstract While violence against children in Turkey was widespread, people across the country were shocked by the news of seven atrocious child molestation cases,one after another over the course of a week in April 2010. Ayşen Özyeğin, Founder and President of the Mother Child Education Foundation (in Turkish, Anne Çocuk Eğitim Vakfı—AÇEV), a nonprofit organization devoted to supporting disadvantaged children and their families and promoting early childhood education, called a Board meeting to discuss whether the organization should assume a role in addressing the child protection crisis. ACEV’s leaders prepared to present recommendations to their fellow Board Members and to consider decisions critical for both the agency’s future and for Turkey’s children.

Datar, S.M., Cyr, L. & Bowler, C.N. , 2018. Innovation at Insigne Health , Harvard Business Publishing: Harvard T.H. Chan School of Public Health case collection. Available from Harvard Business Publishing Abstract Insigne Health is a for-profit, integrated health insurer/health care provider whose leadership believes that by shifting members' focus from "sickness" to "well-being" it could increase the overall health of its insured population and decrease the resources it spends each year on delivering care. The case puts students in the role of design researcher charged with understanding the member segment about which Insigne Health leadership is most concerned: The "silent middle." This cohort represents 70% of membership and is "neither sick nor well." Without changes in a range of behaviors, these members may be quietly developing conditions that will evolve into costly chronic diseases. From interviews included in the case, students uncover insights into member behavior and, based on these insights, generate and develop concepts to help members change behaviors and lead healthier lives.

Weinberger, E. , 2014. Beauty and the Breast: Mobilizing Community Action to Take on the Beauty Industry , Harvard T.H. Chan School of Public Health: Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED). Download free of charge Abstract How does one learn to become an effective advocate? “Beauty and the Breast: Mobilizing Community Action to Take on the Beauty Industry” tells the story of protagonist Joe Wendell, known as Wendell, an emergency room nurse and widower raising a teenage daughter in Franklin, a largely working class town in the fictional US state of Columbia. One day his daughter announces she would like to have breast implants. The distressing news prompts Wendell into new, unforeseen directions as he learns all he can about implants and surgery, the “beauty culture” permeating society especially in his community, and the psychological development of teenagers. Though relieved to find out that as long as she is a minor she cannot legally obtain the surgery without his consent (and, no doubt, without his cash), Wendell starts to believe that greater protections for teen girls in Columbia are needed. In this effort he is guided by the confident figure of Anna Pinto, director of a community center in an East Franklin neighborhood with a vibrant Brazilian-American community where cosmetic surgery, especially for girls and young women, is something she perceives to be a particular problem and has some ideas about how to address. Teaching note available for faculty/instructors .

Dockery, D. , 2009. Can Manufacturing Popcorn Make You Sick? , Harvard T.H. Chan School of Public Health. Case available upon request from author .

The Palestinian Bedouin of the Negev desert are a minority community within Israel, one that has experienced limits on its rights to land use and health access. The Bedouin claim of ownership of their ancestral lands is disputed by the state of Israel, which has attempted to condition access to state services, like health clinics, on the relinquishing of land claims. After the passage of universal healthcare in Israel in 1995, the Bedouin and their representatives developed a legal strategy to secure a right to health on their ancestral lands. This case explores this legal fight, the historical and health contexts of Bedouin citizens of Israel, the limitations of the law in pursuit of justice, and the role of community organizing in the struggle for fundamental rights to health. It highlights the concept of settler colonialism and the relevance of historical context when striving to secure health. Finally, it also emphasizes the distinction between public narratives about vulnerable populations from actors with power such as the State and the narratives of the vulnerable community populations themselves.

Research article
Open access
Published: 29 June 2020

Elderly patients with complex health problems in the care trajectory: a qualitative case study

Marianne Kumlin ORCID: orcid.org/0000-0002-5639-4120 1 , 2 , 3 ,
Geir Vegar Berg 2 , 4 ,
Kari Kvigne 1 &
Ragnhild Hellesø 3

BMC Health Services Research volume 20 , Article number: 595 ( 2020 ) Cite this article

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Metrics details

Elderly patients with multiple health problems often experience disease complications and functional failure, resulting in a need for health care across different health care systems during care trajectory. The patients’ perspective of the care trajectory has been insufficiently described, and thus there is a need for new insights and understanding. The study aims to explore how elderly patients with complex health problems engage in and interact with their care trajectory across different health care systems where several health care personnel are involved.

The study had an explorative design with a qualitative multi-case approach. Eleven patients ( n = 11) aged 65–91 years participated. Patients were recruited from two hospitals in Norway. Observations and repeated interviews were conducted during patients’ hospital stays, discharge and after they returned to their homes. A thematic analysis method was undertaken.

Patients engaged and positioned themselves in the care trajectory according to three identified themes: 1) the patients constantly considered opportunities and alternatives for handling the different challenges and situations they faced; 2) patients searched for appropriate alliance partners to support them and 3) patients sometimes circumvented the health care initiation of planned steps and took different directions in their care trajectory.

Conclusions

The patients’ considerations of their health care needs and adjustments to living arrangements are constant throughout care trajectories. These considerations are often long term, and the patient engagement in and management of their care trajectory is not associated with particular times or situations. Achieving consistency between the health care system and the patient’s pace in the decision-making process may lead to a more appropriate level of health care in line with the patient’s preferences and goals.

Peer Review reports

The World Health Organization [ 1 ] highlighted the need to implement an integrated people-centred health service, particularly for people with chronic or complex health conditions in need of care and support. Elderly persons with multiple health problems often experience disease complications and functional failure, resulting in a need for health care across different levels of care and social services. It has been shown that such care trajectories can be complex when many health and social personnel are involved [ 2 , 3 ].

Several terms have been used to describe patients’ needs that span levels of health care system, including care pathways, clinical pathways, critical pathways, care trajectories, standardised patient pathways and care bundles. The term care pathway can be defined as the management of care and chronological activities of a health care process for a well-defined group of patients during a well-defined period of time [ 4 ]. Standardised care pathways have been suggested as a solution for ensuring patient safety, improving risk-adjusted patient outcomes, increasing patient satisfaction and optimizing the use of resources [ 5 ]. Nevertheless, studies have shown that standardised care pathways are more effective in contexts with predictable care trajectories and low uncertainty and complexity [ 4 , 6 , 7 ]. At present, health care authorities have an increased demand for patient treatment standardisation and patient treatment individualisation. Standardised care pathways promote procedures and standardised activities. However, questions have been asked if these pathways are a risk to patient preferences and if individual needs will receive less attention [ 8 , 9 ].

In this study, we chose the term care trajectory that is commonly used to describe a patient’s journey through the health care system. According to Allen et al. [ 10 ], the term refers to ‘the unfolding of patients health and social care needs, the total organisation of work associated with meeting those needs, plus the impact on those involved with that work and its organisation’ [ 10 ]. They provide a framework for the understanding of the linkages between individual trajectories of care and broader health and social care systems.

Many elderly patients with multiple health problems perceive health services as complex and challenging to comprehend, and therefore need support from health care professionals to ensure continuity of services. The transition from hospital to home can be an uncertain and challenging experience [ 11 , 12 , 13 ]. Information and participation in planning and decision-making during hospital stays and discharge may be inadequate; therefore, elderly patients should be encouraged to participate. Studies have shown that patients’ health needs must be considered and the hospital environment should be organised and prepared to encourage patients’ participation in their discharge planning [ 14 , 15 , 16 , 17 ].

International as well as Norway health authorities have deployed standardised care pathways for specific patient groups. However, in Norway, no care pathways have been fully established and understood for elderly patients with multiple health problems [ 18 ]. Local tailoring combined with standardisation can be important in developing pathways that enable different purposes and contexts [ 19 , 20 , 21 ].

Research has emphasised the need to expand our understanding of complex care trajectories and why integrated health and social service care can be challenging. The importance of investigating how individual activities and decisions take place in an organisational context and how involved persons interact has also been emphasised [ 22 ].

The perspectives of elderly patients with complex health problems of care trajectories have been insufficiently described in previous studies [ 8 , 19 , 23 , 24 ]. New insights are required to achieve an integrated care pathway. Therefore, this study aims to explore how elderly patients with complex health problems engage in and interact with their care trajectories across different health care systems where several health personnel are involved.

The study used an explorative design. We adopted a qualitative multi-case approach to obtain an in-depth understanding of patients’ perspectives of care trajectories and how patients participate during their hospital stay, discharge and return to home process. This case approach was considered appropriate for examining patients’ real care trajectories because it was possible to account for the diversity of context [ 25 ]. The multi-case method enabled the exploration of inequalities and similarities across care trajectories, aiming to identify common patterns [ 26 ]. We recruited 11 patients representing diversity across contexts for our data collection. For each case, observations and multiple interviews were carried out to elucidate the divergent aspects of care trajectories. The cases provided us with rich and comprehensive information relevant to the aim of this study [ 25 ].

Setting and participants

The Norwegian health care system consists of two organisational structures. The local municipalities are responsible for providing primary care services, including general practitioners (GPs), intercommunal emerging primary care centres, home care services, nursing homes and preventive services. The Ministry of Health and Care Services is responsible for specialist care, which involves all hospitals. In 2012, the government implemented the Norwegian Coordination Reform [ 27 ] to strengthen the interaction between different levels of health services and to secure coordinated health care. Development of integrated care pathways, especially for patients with long-lasting complex health needs, has increased the focus on developing pathways. This reform, combined with the Patients Right Act, emphasises the importance of patient participation in improving the continuity and quality of care.

To identify patients who met our inclusion criteria, the study’s starting point was conducted at two different hospitals located in the same health region: one rural and one urban hospital. We intended to follow patients during their hospital stays and trajectories across different health care levels. We considered it inappropriate to recruit patient participants prior to possible hospital admissions. The recruiting process was, therefore, conducted at the hospital departments.

Patients were selected from the surgery and internal medicine departments of the hospitals. The inclusion criteria for the patient participants were as follows: older than 65 years, having 2 or more chronic diseases and living at home before hospital admission. The exclusion criteria were if the patient was not capable of giving consent or in the terminal phase. A contact nurse in the eligible departments informed the patients verbally and in writing about the study. Eighteen patients were requested for participation. Eleven patients consented to participate whereas seven patients declined due to worsening health conditions. The patients varied in age and the distance between their homes and the hospitals. Patients from nine different municipalities were involved. The population ranged from 2000 to 27.000 inhabitants. Characteristics of the patients who agreed to participate and the observation period for each patient are shown in Table 1 . No participants dropped out of the study.

Data collection

We applied an observationally driven approach to this case study [ 28 ]. The starting point for the data collection was to meet the patient in the department where he or she was hospitalized. The first author (MK), a PhD candidate and an experienced geriatric nurse, conducted field notes and conversations with the patients and repeated more structured interviews with the patients during the observation period. The professional background of the researcher was known to the participants. Moderate participant observation was used; the researcher was identifiable, interacted with the participants and engaged in activities, but did not participate in the setting [ 29 ].

The focus of the observations was to identify situations and activities during the care trajectory in connection with the health services and patient’s interactions with the involved persons. Typically, observation points at the hospitals involved sitting with the patient and observing activities and dialogue between the patient and health personnel, observing morning meetings with the staff group, noting pre-visits and doctors’ attendance at the patients’ rooms and following patients during discharge and their transfer home. In the municipalities, the observations commenced at the professional base of the homecare nursing or the multidisciplinary team and following the staff on their visits to the patients’ homes. On some days, when the first author visited patients at their homes or rehabilitation units, the next of kin was also present. The length of the structured interview varied from 5 to 45 min, according to the patient’s health status and day-to-day condition. The main theme of the interview was on the patient’s past, current, and future perspective on the care trajectory (See additional file 1 ). Overall, the first author conducted 24 structured interviews and 86 h of observations. The data were collected from November 2017 to June 2018.

Analysis process

The first author transcribed all the recorded interviews verbatim. Field notes were written down as short sentences during the observation. Immediately after the observations, the field notes were expanded into full sentences. All the data was de-personalised before analysis. A thematic analysis approach using Braun and Clarke’s [ 30 ] was applied . Initially, the first author read the field notes and the interviews thoroughly and chronologically for each case to identify essential characteristics and patterns. Notes were taken to describe the descriptive and analytical attributes of the data. Thereafter, the data were read and coded systematically and the codes were organised into possible sub-themes for the entire cases as illustrated in Table 2 . The back-and-forth process between the codes and possible themes involved reviewing relevant research and theoretical perspectives to help understand the data. This process revealed three main themes.

Ethical considerations

The study has been notified by the Norwegian Centre for Research Data (ID: 54551) and assessed and approved by the hospital data controller of the two hospitals.

Participation in this research was based on informed, voluntary consent. Ethical issues related to consent were considered during the recruitment process. During the observation period, the first author had a special awareness of maintaining voluntary and consent-based participation. Information about the possibilities to withdraw any time from the study was given both verbally and in writing. The first author had no contact with the patients before they were informed of this study by the nurse. The patients’ consent to participate was given both verbally and in writing. To ensure that patient anonymity is protected, some of the demographic data were rewritten. Hospitals and municipalities involved in the studies were anonymised.

The overall findings of this study suggest that patients’ engagement in managing their care during the care trajectory is not a linear process regarding time and space or situations and events that need action. They chose a variety of strategies to participate in their care management, driving the care trajectory forward and handling barriers. The patients were engaged and positioned themselves according to three identified themes: continuous consideration of opportunities and alternatives, consideration for appropriate alliances and circumvention of the health care initiation of planned steps.

The analyses revealed that the care trajectory is characterised as a landscape of complex and interconnected events and situations—sometimes planned, chaotic or ad hoc. In some settings during the care trajectory, patients need to deal with many activities simultaneously. The observations revealed that, in some situations, patients had to manage information on the follow-up treatment, medication changes, decisions regarding further health care and readiness to return home or nursing homes, which was given at the same time.

Another simultaneous event that occurred during hospital stays was when health personnel decided to move a patient to another ward or unit at the hospital because of limited space while they were prepared for discharge. Such a situation could be sudden and unexpected to the patient. On the day of discharge from the hospital, several activities, such as ongoing treatment and various controls, were conducted. In the municipality, the patient could receive health care services from several units with different health personnel involved, including homecare nursing and home care assistance, multidisciplinary team, physiotherapists and GPs. Parallel to primary care health services, patients also received outpatient treatment at the hospital.

To provide an in-depth understanding of the themes, cases that are typically for each theme are chosen.

Continuous consideration of options and alternatives

A strategy some patients used was to continuously consider options and possibilities on how they managed different actions and challenges during their care trajectory. The patients expressed their views on their current health situations. Furthermore, they also questioned how they could manage their situations and use their strength and energy appropriately and weighed different possibilities. They consider what was most important, what could wait and what was not possible.

Sometimes patients felt they were not ready to make decisions concerning changes in their housing situation or plan for further health care. They chose to see ‘what happens’ and prolong the decision. In situations involving several individuals and rapid changes in care environments, patients deliberated about their strength and capacity and assumed a distant or observant position.

Below, we chose to present two typical cases that describe the patients’ considerations of their opportunities and alternatives to housing conditions and further health care. The patients needed long-term decision-making beyond the period of hospitalisation and discharge planning. They held off on deciding until they were ready for it.

Anna was admitted to an internal unit at the local hospital due to chronic breathing difficulty that worsened. Anna lived in her apartment in a community near the hospital. A homecare nurse visited her once a day; and during the rest of the day, Anna managed by on her own. In the early phase of her stay at the hospital, she expressed that she was afraid she could no longer manage by herself at home; her health condition was too poor. However, she was still looking for possible options for going home and thinking about what she might need in terms of health care and facilitation, such as night visits by homecare nurses. This option was important for her, as it made her feel safe about being alone at home.

A few days after hospitalization, Anna was discharged to a rehabilitation unit in her home community. During her stay at the hospital and the rehabilitation unit, there was a conversation between her and the health personnel about either being discharged to her apartment or being moved to a nursing home. Anna was reluctant to be active in these decisions . Several times during these weeks, she expressed that she had to be in better shape and wait for further development before making a decision as illustrated in this quote:

‘When I feel that I can’t manage myself at home, there is no point in trying. Then, I just have to get help from someone by applying for a permanent place in a nursing home or a sheltered house. However, I have to say I am not ready for that yet. If I do not get any better, then I will have no choice, but I have to decide on that later. I will take it one day at a time and see what happens .’

After 3 weeks at the rehabilitation unit, Anna expressed that she needed to take it 1 day at a time but could already take a more active position:

‘I still have problems with my breath, but I am so satisfied and feel I am in better shape. I know my body. Next week, I will go home with help from homecare nurses. Tomorrow, we are going to have a meeting here. Then, we will decide on the number of visits I will need from the homecare nurse. Then, I will know. We are going to have the meeting together with the leader at the unit. ’

Anna’s case shows how several patients constantly considered their capacity and strength and continuously searched for possibilities and options. Anna chose to wait and hold off on deciding whether she should return home or to a nursing home.

May considered changing the house conditions to achieve the appropriate level of care for herself and her husband. She lived with her husband, who received assistance every day from homecare nurses due to illness and functional decline. They lived in a single house with bedrooms on the second floor. May took care of housekeeping, organised health care, and kept in touch with their GP and homecare nurses, among others. I (first author) met May when she was admitted to a hospital because of vertigo and declining general conditions, and followed her during her hospital stay and some months after her return home. After her discharge, she and her husband started receiving additional homecare nursing assistance, and a personal emergency response system was installed in their home. She worried that she and her husband could fall down their stairs. She mentioned several times that she and her husband were discussing applying for sheltered housing. According to May, the health personnel in community care told them many times that they could move to a sheltered house. She expressed:

‘We intend to apply for it, but we have not chosen to do so yet. Now, life goes on as before. It's stable, and I’ve got a personal emergency response system. The neighbour picks up the mail for us. Basically, we do not want to move out of the house as long as we can manage to lock the door!’

The cases show the constant considerations of what options would be the best for them.

Consideration of appropriate alliance partners

One strategy that patients used to handle unclear situations and considerations of health care was to search for health personnel they found trustworthy who could help them organise their health care needs. The patients described the people that supported them in their daily living and the trustworthiness of the health personal. These trusted persons and health personnel were strong alliances for patients during their care trajectories.

The following case describes how a patient actively searched for health care personnel who could help or take responsibility in his situation, which involved persistent health problems.

Eric was a patient with a complicated and persistent illness. After spending several weeks in a hospital for diagnosis and treatment, he was discharged and sent home. He lived with his wife in an apartment. Eric followed-up with two different wards at the hospital and received homecare nursing and physical therapy from the municipal health service. In daily life, he expressed that he and his wife had many unanswered questions about his health problems and symptoms. Eric mentioned several times how challenging it was to find health care personnel at the hospital who could give accurate information and somebody who could be responsible for his ongoing medical treatment. He was told that he needed to contact his GP, but he felt his GP was not particularly involved. Due to his limited interaction with his GP, Eric felt his symptoms were initially not taken seriously, and he lost trust in his GP. At one point, Eric felt he needed advice related to specific symptoms involving his leg and ongoing treatment but felt that he was not likely to receive proper health care. Thus, he approached a homecare nurse he trusted to contact the doctor at the hospital on his behalf about his concern with the leg. He told he did it this way:

‘The call becomes a priority when the nurse calls to ask about the symptoms. I talked to the nurse about this physiotherapist too, he needs a case summary and referral from the doctor. Now it’s okay, I got this by the doctor when I was at the hospital for treatment this week.’

This case illustrates how a patient actively searched for alliance partners to obtain access to proper health care in a setting where he needed to interact with many actors at different levels.

Circumventing the health care initiation of planned steps

We also identified cases where patients circumvented the hospitals’ formal planning systems because the situations were not well-facilitated or appropriate for their ability to participate. In some cases, patients design their care trajectory. The following case is an example of how a patient circumvented the hospital’s planning process.

Henry was admitted to a hospital because of heart failure. Some complications in his health situation unexpectedly prolonged his hospital stay. Because Henry suffered from hearing loss and slowed speech, it was challenging for him to understand and follow the information that was given to him at the hospital. During the pre-visit, the nurse and doctor discussed Henry’s return home. The nurse announced that Henry would need to establish some home care services, if nothing else, to help with his medication. During his doctor’s patient rounds, Henry did not have sufficient time to ask questions or give feedback. Henry tries to tell the doctor he has some questions, but it takes time because of his trouble with the speech. After a few seconds, the doctor says he can contact a nurse when he remembers.

After the visit, Henry told me (first author) that he was unsure about what the doctor meant when he told Henry that he should stay for at least one more day, that is, whether it meant that he might return home the next day or not.

Henry lived with his wife in a single house located in a rural area far from the hospital. His next of kin and health personnel from the community could not visit him during his hospital stay. He described his lasting relationship with the leader of the local homecare nursing facility and his GP. He expressed trust in the local health service like this.

‘I regularly visit my GP to take blood samples. I think my doctor is very capable. The leader in the homecare facility is a decent person. He knows about everything. He has helped us several times.’

During his hospital stay, Henry spoke of having phone contact with the leader of the homecare nursing facility. Together, they organised his need for health care and the assistance that he would require after discharge. He also contacted a neighbour to take care of snow shovelling at his home. The leader of the homecare nursing facility stated that he had known Henry and his wife for a long time. He added that Henry had been clear about coming home instead of being transferred to a nursing home. According to the leader, phone contact served as a way to stay in contact with the patient during the latter’s hospital stay.

This case is an example of how a patient actively chose another approach to handle the further direction of his care trajectory. The hospital’s environment and discharge planning did not functionally allow Henry to interact with health personnel. The next of kin could not be near the hospital for support. Therefore, he sought a new option for handling his situation and circumvented the hospital personnel’s plans and processes for discharge.

How the patients were engaged with and interacted in their care trajectories varied and was influenced by their health conditions and how their situation afterward could be managed. We found that the patients, who are often described as vulnerable, carried out considerable ‘homework’ to navigate their health condition as well as the system they accounted [ 31 ]. The patients constantly considered opportunities and alternatives in interaction, negotiations and relationships between many actors, or ‘players’ [ 22 ] for handling the different challenges and situations that occurred during their care trajectory. To understand why and how they searched for appropriate alliance partners to support them, and in some situations, how they circumvented the planned steps and took different directions in the care trajectory will be discussed against the conceptualisation of care trajectory game (CTG) [ 22 ]. The CTG framework merges Strauss et al.’s [ 32 ] descriptions on illness trajectories and Elias’s [ 33 ] game model and provide a framework to understand and address the dynamics and complexity in the system and thus, move away of thinking trajectories in mono-causal explanations which appear to be the characteristics of current policy [ 3 , 8 ].

The complexity in the patients’ care trajectory became visible throughout the patient’s multiple considerations about options and multiple alternatives they needed to take into account. They were dealing with balancing their strength and capacity and the complexity of the health care system in how they could be involved in decision-making. Their considerations seemed to be a continuous process. We identified that patient participation in their care trajectory was not linked to specific times or situations. Issues regarding the need for necessary health care and life modifications or changes in living arrangements were deliberated for patients throughout their entire hospital stays and continued after discharge. It was often an ongoing negotiation between patients, health personnel and next of kin. Patients wanted to have options, but time for recovery was often essential in preparing them for participation in decision-making. The patients’ also seemed to keep a watchful waiting whereby they try to maintain the status quo to desired preferences for as long as possible. The patients in this study used different strategies in situations with a disagreement between their preferences, health care need and initiation of planned steps. For example, they waited to be ready for decisions, circumvented planned steps and found a new direction in their trajectory. Allen et al. [ 22 ] point on that ‘disagreement’ over plan for further direction in the care trajectory not necessarily needs to be negative for the patient. The negotiations and different input from the involved can bring new opportunities and options, which are more in line with the patients’ preferences. It is not appropriate to try to simplify the complex care trajectories, but rather organize the services so that several opportunities and alternatives can be included [ 22 ]. Today’s health care system is characterised by overall expectations to the health personnel to working quickly and efficiently in bed administration, and hospital period is shortening [ 34 , 35 ]. With reference to CTG, health professionals can form an alliance to achieve an effective transfer of care. As an example to press for a nursing home placement rather than a home discharge, that can be easier to organize. From a health personnel perspective can this solution simplify the complexity in the organization of the patient care trajectories, but on the other side lock and hinder the patient’s ability to see different opportunities and alternatives, which are in preference to the patient’s wishes [ 22 ].

Our findings describe situations with interactions between patients and many health personnel at different health services levels. These situations increased the patients’ perceived considerations regarding which personnel could take responsibility for their treatment and organisation of their care. Existing literature has described patients’ and next of kin’ experiences of fragmentation regarding obtaining control and access to the health care system during discharge and follow-up care, which are in line with our findings [ 36 , 37 , 38 ]. We found that to handle fragmentation and uncertainty about health care, the patients sought alliance partners who could help in their interaction with and access to health care. When complexity increases in the care trajectory, fragmentation increases between the involved actors, leading to a re-grouping of those involved [ 22 ]. Unanswered questions about health problems and symptoms were uncertainty patients in our study experience and a lack of available and appropriate information. Kneck et al. [ 39 ] have pointed out that the patient is expected to be an active partner, but that the patients at home can have insufficient information to manage their illness. They may be unsure of ‘which symptoms might occur and who to contact for different needs’ [ 39 ]. Mattingly et al. [ 31 ] use the term ‘chronic homework, about tasks the patients and family caregivers are expected to carry out when moving health care from hospital to home. Their supporting network was essential to handle this ‘homework’, and to strengthen the patient’s possibility to take responsibility for their care. In our study, the patients described how they used their alliance partner strategically as an important support to achieve access to health care and to drive the plan further in the trajectory.

When the patients experienced that they were not involved in decisions concerning themselves, they used their strategies to circumvent the system. Insufficient facilitation of patient participation in the care environment is another barrier described in our study. Time and space for patients to participate in discussions about their health and the need for health care were not always arranged properly. Despite these situations, the patients considered their possibilities and alternatives and circumvented barriers and make their further plans . According to CTG, the resources available can both shape the complexity and cause those involved to make various moves to circumvent barriers.

Findings in our study describe inadequate facilitation of participation and necessary access to health care, norms and the view of the elderly person may contribute to it. Health professionals’ views of the elderly and younger are highlighted as a possible challenge in access to treatment and follow-up [ 40 , 41 ]. Hamran et al. [ 40 ] found that only based on a norm understanding that ‘they are just old’ access to health care could be less, and the time for treatment and improvement was expected to be resolved in the same way as young people who do not have the same complexity. Norms and values are interviewing with the actions and decisions in the care trajectory and increases complexity [ 22 ].

Implication for practice

For an elderly patient with complex health problems, there is expedient to develop a care trajectory that is developed to meet the need for flexibility. In practice, it can mean accepting that the patient is about participating in managing and making decisions, often a continuous and long-term process. Facilitating for this in organizing the health system service, and time and space for the patients’ considerations to managing necessary modifications in everyday life such as re-housing or move to a nursing home.

Methodological strengths and limitations

Triangulation of data sources, observations and individual interviews were used to investigate the care trajectory from different perspectives and settings, which was appropriate given then intention of the current study to gain a richer and deeper insight of patients’ care trajectories.

The first author who conducted the observations and interviews was an experienced geriatric nurse. The researcher’s assumption, skills and knowledge will influence the focus in observations and shape the interpretation [ 42 ]. Background as a nurse gave the advantage to understand the field. To strengthen the trustworthiness, additional reflection notes were performed describing choices, questions or thoughts that arose during the observations and were for review by the research group.

The first author followed each patient over a long period, which contributed to a broad understanding of each patient’s case. We experienced some challenges in recruiting participants due to patients’ health conditions and vulnerable situations. Despite that the participants’ age, living situation and home setting varied. Since the findings are based on a small sample, they should be considered with caution in the light of generalizability. Nevertheless, we believe these findings provide new insight and understanding of the complexity of elderly patients’ care trajectories.

The patients’ considerations of their health care needs and adjustments to living arrangements are constant throughout the care trajectory. These considerations are often long term, and the patients engagement in and management of their care trajectory is not associated with particular times or situations. It may be important for elderly patients’ time for recovery in order to consider different possibilities and options before managing necessary modifications in everyday life.

Disagreements between preferences, the need for health care and the initiation of planned steps, leads to different strategies from the patients. They wait to be ready for decisions, circumvent planned steps and find a new direction in their trajectory.

Achieving consistency between the health care system and the patient’s pace in the decision-making process during the care trajectory, may lead to a more appropriate level of health care in line with the patient’s preferences.

Abbreviations

General practitioner

Care trajectory game

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Acknowledgments

We would like to give our sincere thanks to the patient who participated in this study. Furthermore, we will thank all the staff in the hospitals and the municipalities who helped recruiting and facilitating the study.

Availability of data materials

The data materials generated during the current study are not publicly available due to the sensitive and identifiable nature of the data. Despite names and other identifiers being removed, the in-depth nature of the interviews and field notes themselves may mean that participants can be identified from the full transcripts.

This project is founded by a grant from the Inland Norway University of Applied Sciences and a grant from the Innlandet Hospital trust Norway. The funding body has had no role in the design of the study, the data collection, the analysis and the interpretation of data or the writing of the manuscript.

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Inland Norway University of Applied Sciences, Elverum, Norway

Marianne Kumlin & Kari Kvigne

Innlandet Hospital Trust, Lillehammer, Norway

Marianne Kumlin & Geir Vegar Berg

Department of Nursing Science, Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway

Marianne Kumlin & Ragnhild Hellesø

Department of Health Sciences, NTNU, Faculty of Medicine and Health Sciences, Gjøvik, Norway

Geir Vegar Berg

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Contributions

MK, KK, GVB, RH contributed to the conception and design the study. MK performed the data collection and the analysis, and developed the manuscript. KK, GVB, RH contributed to the interpretation of analysis. MK and RH critical revised the manuscript. All authors read an approved the final manuscript.

Corresponding author

Correspondence to Marianne Kumlin .

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The case study approach

Sarah Crowe 1 ,
Kathrin Cresswell 2 ,
Ann Robertson 2 ,
Guro Huby 3 ,
Anthony Avery 1 &
Aziz Sheikh 2

BMC Medical Research Methodology volume 11 , Article number: 100 ( 2011 ) Cite this article

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The case study approach allows in-depth, multi-faceted explorations of complex issues in their real-life settings. The value of the case study approach is well recognised in the fields of business, law and policy, but somewhat less so in health services research. Based on our experiences of conducting several health-related case studies, we reflect on the different types of case study design, the specific research questions this approach can help answer, the data sources that tend to be used, and the particular advantages and disadvantages of employing this methodological approach. The paper concludes with key pointers to aid those designing and appraising proposals for conducting case study research, and a checklist to help readers assess the quality of case study reports.

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Introduction

The case study approach is particularly useful to employ when there is a need to obtain an in-depth appreciation of an issue, event or phenomenon of interest, in its natural real-life context. Our aim in writing this piece is to provide insights into when to consider employing this approach and an overview of key methodological considerations in relation to the design, planning, analysis, interpretation and reporting of case studies.

The illustrative 'grand round', 'case report' and 'case series' have a long tradition in clinical practice and research. Presenting detailed critiques, typically of one or more patients, aims to provide insights into aspects of the clinical case and, in doing so, illustrate broader lessons that may be learnt. In research, the conceptually-related case study approach can be used, for example, to describe in detail a patient's episode of care, explore professional attitudes to and experiences of a new policy initiative or service development or more generally to 'investigate contemporary phenomena within its real-life context' [ 1 ]. Based on our experiences of conducting a range of case studies, we reflect on when to consider using this approach, discuss the key steps involved and illustrate, with examples, some of the practical challenges of attaining an in-depth understanding of a 'case' as an integrated whole. In keeping with previously published work, we acknowledge the importance of theory to underpin the design, selection, conduct and interpretation of case studies[ 2 ]. In so doing, we make passing reference to the different epistemological approaches used in case study research by key theoreticians and methodologists in this field of enquiry.

This paper is structured around the following main questions: What is a case study? What are case studies used for? How are case studies conducted? What are the potential pitfalls and how can these be avoided? We draw in particular on four of our own recently published examples of case studies (see Tables 1 , 2 , 3 and 4 ) and those of others to illustrate our discussion[ 3 – 7 ].

What is a case study?

A case study is a research approach that is used to generate an in-depth, multi-faceted understanding of a complex issue in its real-life context. It is an established research design that is used extensively in a wide variety of disciplines, particularly in the social sciences. A case study can be defined in a variety of ways (Table 5 ), the central tenet being the need to explore an event or phenomenon in depth and in its natural context. It is for this reason sometimes referred to as a "naturalistic" design; this is in contrast to an "experimental" design (such as a randomised controlled trial) in which the investigator seeks to exert control over and manipulate the variable(s) of interest.

Stake's work has been particularly influential in defining the case study approach to scientific enquiry. He has helpfully characterised three main types of case study: intrinsic , instrumental and collective [ 8 ]. An intrinsic case study is typically undertaken to learn about a unique phenomenon. The researcher should define the uniqueness of the phenomenon, which distinguishes it from all others. In contrast, the instrumental case study uses a particular case (some of which may be better than others) to gain a broader appreciation of an issue or phenomenon. The collective case study involves studying multiple cases simultaneously or sequentially in an attempt to generate a still broader appreciation of a particular issue.

These are however not necessarily mutually exclusive categories. In the first of our examples (Table 1 ), we undertook an intrinsic case study to investigate the issue of recruitment of minority ethnic people into the specific context of asthma research studies, but it developed into a instrumental case study through seeking to understand the issue of recruitment of these marginalised populations more generally, generating a number of the findings that are potentially transferable to other disease contexts[ 3 ]. In contrast, the other three examples (see Tables 2 , 3 and 4 ) employed collective case study designs to study the introduction of workforce reconfiguration in primary care, the implementation of electronic health records into hospitals, and to understand the ways in which healthcare students learn about patient safety considerations[ 4 – 6 ]. Although our study focusing on the introduction of General Practitioners with Specialist Interests (Table 2 ) was explicitly collective in design (four contrasting primary care organisations were studied), is was also instrumental in that this particular professional group was studied as an exemplar of the more general phenomenon of workforce redesign[ 4 ].

What are case studies used for?

According to Yin, case studies can be used to explain, describe or explore events or phenomena in the everyday contexts in which they occur[ 1 ]. These can, for example, help to understand and explain causal links and pathways resulting from a new policy initiative or service development (see Tables 2 and 3 , for example)[ 1 ]. In contrast to experimental designs, which seek to test a specific hypothesis through deliberately manipulating the environment (like, for example, in a randomised controlled trial giving a new drug to randomly selected individuals and then comparing outcomes with controls),[ 9 ] the case study approach lends itself well to capturing information on more explanatory ' how ', 'what' and ' why ' questions, such as ' how is the intervention being implemented and received on the ground?'. The case study approach can offer additional insights into what gaps exist in its delivery or why one implementation strategy might be chosen over another. This in turn can help develop or refine theory, as shown in our study of the teaching of patient safety in undergraduate curricula (Table 4 )[ 6 , 10 ]. Key questions to consider when selecting the most appropriate study design are whether it is desirable or indeed possible to undertake a formal experimental investigation in which individuals and/or organisations are allocated to an intervention or control arm? Or whether the wish is to obtain a more naturalistic understanding of an issue? The former is ideally studied using a controlled experimental design, whereas the latter is more appropriately studied using a case study design.

Case studies may be approached in different ways depending on the epistemological standpoint of the researcher, that is, whether they take a critical (questioning one's own and others' assumptions), interpretivist (trying to understand individual and shared social meanings) or positivist approach (orientating towards the criteria of natural sciences, such as focusing on generalisability considerations) (Table 6 ). Whilst such a schema can be conceptually helpful, it may be appropriate to draw on more than one approach in any case study, particularly in the context of conducting health services research. Doolin has, for example, noted that in the context of undertaking interpretative case studies, researchers can usefully draw on a critical, reflective perspective which seeks to take into account the wider social and political environment that has shaped the case[ 11 ].

How are case studies conducted?

Here, we focus on the main stages of research activity when planning and undertaking a case study; the crucial stages are: defining the case; selecting the case(s); collecting and analysing the data; interpreting data; and reporting the findings.

Defining the case

Carefully formulated research question(s), informed by the existing literature and a prior appreciation of the theoretical issues and setting(s), are all important in appropriately and succinctly defining the case[ 8 , 12 ]. Crucially, each case should have a pre-defined boundary which clarifies the nature and time period covered by the case study (i.e. its scope, beginning and end), the relevant social group, organisation or geographical area of interest to the investigator, the types of evidence to be collected, and the priorities for data collection and analysis (see Table 7 )[ 1 ]. A theory driven approach to defining the case may help generate knowledge that is potentially transferable to a range of clinical contexts and behaviours; using theory is also likely to result in a more informed appreciation of, for example, how and why interventions have succeeded or failed[ 13 ].

For example, in our evaluation of the introduction of electronic health records in English hospitals (Table 3 ), we defined our cases as the NHS Trusts that were receiving the new technology[ 5 ]. Our focus was on how the technology was being implemented. However, if the primary research interest had been on the social and organisational dimensions of implementation, we might have defined our case differently as a grouping of healthcare professionals (e.g. doctors and/or nurses). The precise beginning and end of the case may however prove difficult to define. Pursuing this same example, when does the process of implementation and adoption of an electronic health record system really begin or end? Such judgements will inevitably be influenced by a range of factors, including the research question, theory of interest, the scope and richness of the gathered data and the resources available to the research team.

Selecting the case(s)

The decision on how to select the case(s) to study is a very important one that merits some reflection. In an intrinsic case study, the case is selected on its own merits[ 8 ]. The case is selected not because it is representative of other cases, but because of its uniqueness, which is of genuine interest to the researchers. This was, for example, the case in our study of the recruitment of minority ethnic participants into asthma research (Table 1 ) as our earlier work had demonstrated the marginalisation of minority ethnic people with asthma, despite evidence of disproportionate asthma morbidity[ 14 , 15 ]. In another example of an intrinsic case study, Hellstrom et al.[ 16 ] studied an elderly married couple living with dementia to explore how dementia had impacted on their understanding of home, their everyday life and their relationships.

For an instrumental case study, selecting a "typical" case can work well[ 8 ]. In contrast to the intrinsic case study, the particular case which is chosen is of less importance than selecting a case that allows the researcher to investigate an issue or phenomenon. For example, in order to gain an understanding of doctors' responses to health policy initiatives, Som undertook an instrumental case study interviewing clinicians who had a range of responsibilities for clinical governance in one NHS acute hospital trust[ 17 ]. Sampling a "deviant" or "atypical" case may however prove even more informative, potentially enabling the researcher to identify causal processes, generate hypotheses and develop theory.

In collective or multiple case studies, a number of cases are carefully selected. This offers the advantage of allowing comparisons to be made across several cases and/or replication. Choosing a "typical" case may enable the findings to be generalised to theory (i.e. analytical generalisation) or to test theory by replicating the findings in a second or even a third case (i.e. replication logic)[ 1 ]. Yin suggests two or three literal replications (i.e. predicting similar results) if the theory is straightforward and five or more if the theory is more subtle. However, critics might argue that selecting 'cases' in this way is insufficiently reflexive and ill-suited to the complexities of contemporary healthcare organisations.

The selected case study site(s) should allow the research team access to the group of individuals, the organisation, the processes or whatever else constitutes the chosen unit of analysis for the study. Access is therefore a central consideration; the researcher needs to come to know the case study site(s) well and to work cooperatively with them. Selected cases need to be not only interesting but also hospitable to the inquiry [ 8 ] if they are to be informative and answer the research question(s). Case study sites may also be pre-selected for the researcher, with decisions being influenced by key stakeholders. For example, our selection of case study sites in the evaluation of the implementation and adoption of electronic health record systems (see Table 3 ) was heavily influenced by NHS Connecting for Health, the government agency that was responsible for overseeing the National Programme for Information Technology (NPfIT)[ 5 ]. This prominent stakeholder had already selected the NHS sites (through a competitive bidding process) to be early adopters of the electronic health record systems and had negotiated contracts that detailed the deployment timelines.

It is also important to consider in advance the likely burden and risks associated with participation for those who (or the site(s) which) comprise the case study. Of particular importance is the obligation for the researcher to think through the ethical implications of the study (e.g. the risk of inadvertently breaching anonymity or confidentiality) and to ensure that potential participants/participating sites are provided with sufficient information to make an informed choice about joining the study. The outcome of providing this information might be that the emotive burden associated with participation, or the organisational disruption associated with supporting the fieldwork, is considered so high that the individuals or sites decide against participation.

In our example of evaluating implementations of electronic health record systems, given the restricted number of early adopter sites available to us, we sought purposively to select a diverse range of implementation cases among those that were available[ 5 ]. We chose a mixture of teaching, non-teaching and Foundation Trust hospitals, and examples of each of the three electronic health record systems procured centrally by the NPfIT. At one recruited site, it quickly became apparent that access was problematic because of competing demands on that organisation. Recognising the importance of full access and co-operative working for generating rich data, the research team decided not to pursue work at that site and instead to focus on other recruited sites.

Collecting the data

In order to develop a thorough understanding of the case, the case study approach usually involves the collection of multiple sources of evidence, using a range of quantitative (e.g. questionnaires, audits and analysis of routinely collected healthcare data) and more commonly qualitative techniques (e.g. interviews, focus groups and observations). The use of multiple sources of data (data triangulation) has been advocated as a way of increasing the internal validity of a study (i.e. the extent to which the method is appropriate to answer the research question)[ 8 , 18 – 21 ]. An underlying assumption is that data collected in different ways should lead to similar conclusions, and approaching the same issue from different angles can help develop a holistic picture of the phenomenon (Table 2 )[ 4 ].

Brazier and colleagues used a mixed-methods case study approach to investigate the impact of a cancer care programme[ 22 ]. Here, quantitative measures were collected with questionnaires before, and five months after, the start of the intervention which did not yield any statistically significant results. Qualitative interviews with patients however helped provide an insight into potentially beneficial process-related aspects of the programme, such as greater, perceived patient involvement in care. The authors reported how this case study approach provided a number of contextual factors likely to influence the effectiveness of the intervention and which were not likely to have been obtained from quantitative methods alone.

In collective or multiple case studies, data collection needs to be flexible enough to allow a detailed description of each individual case to be developed (e.g. the nature of different cancer care programmes), before considering the emerging similarities and differences in cross-case comparisons (e.g. to explore why one programme is more effective than another). It is important that data sources from different cases are, where possible, broadly comparable for this purpose even though they may vary in nature and depth.

Analysing, interpreting and reporting case studies

Making sense and offering a coherent interpretation of the typically disparate sources of data (whether qualitative alone or together with quantitative) is far from straightforward. Repeated reviewing and sorting of the voluminous and detail-rich data are integral to the process of analysis. In collective case studies, it is helpful to analyse data relating to the individual component cases first, before making comparisons across cases. Attention needs to be paid to variations within each case and, where relevant, the relationship between different causes, effects and outcomes[ 23 ]. Data will need to be organised and coded to allow the key issues, both derived from the literature and emerging from the dataset, to be easily retrieved at a later stage. An initial coding frame can help capture these issues and can be applied systematically to the whole dataset with the aid of a qualitative data analysis software package.

The Framework approach is a practical approach, comprising of five stages (familiarisation; identifying a thematic framework; indexing; charting; mapping and interpretation) , to managing and analysing large datasets particularly if time is limited, as was the case in our study of recruitment of South Asians into asthma research (Table 1 )[ 3 , 24 ]. Theoretical frameworks may also play an important role in integrating different sources of data and examining emerging themes. For example, we drew on a socio-technical framework to help explain the connections between different elements - technology; people; and the organisational settings within which they worked - in our study of the introduction of electronic health record systems (Table 3 )[ 5 ]. Our study of patient safety in undergraduate curricula drew on an evaluation-based approach to design and analysis, which emphasised the importance of the academic, organisational and practice contexts through which students learn (Table 4 )[ 6 ].

Case study findings can have implications both for theory development and theory testing. They may establish, strengthen or weaken historical explanations of a case and, in certain circumstances, allow theoretical (as opposed to statistical) generalisation beyond the particular cases studied[ 12 ]. These theoretical lenses should not, however, constitute a strait-jacket and the cases should not be "forced to fit" the particular theoretical framework that is being employed.

When reporting findings, it is important to provide the reader with enough contextual information to understand the processes that were followed and how the conclusions were reached. In a collective case study, researchers may choose to present the findings from individual cases separately before amalgamating across cases. Care must be taken to ensure the anonymity of both case sites and individual participants (if agreed in advance) by allocating appropriate codes or withholding descriptors. In the example given in Table 3 , we decided against providing detailed information on the NHS sites and individual participants in order to avoid the risk of inadvertent disclosure of identities[ 5 , 25 ].

What are the potential pitfalls and how can these be avoided?

The case study approach is, as with all research, not without its limitations. When investigating the formal and informal ways undergraduate students learn about patient safety (Table 4 ), for example, we rapidly accumulated a large quantity of data. The volume of data, together with the time restrictions in place, impacted on the depth of analysis that was possible within the available resources. This highlights a more general point of the importance of avoiding the temptation to collect as much data as possible; adequate time also needs to be set aside for data analysis and interpretation of what are often highly complex datasets.

Case study research has sometimes been criticised for lacking scientific rigour and providing little basis for generalisation (i.e. producing findings that may be transferable to other settings)[ 1 ]. There are several ways to address these concerns, including: the use of theoretical sampling (i.e. drawing on a particular conceptual framework); respondent validation (i.e. participants checking emerging findings and the researcher's interpretation, and providing an opinion as to whether they feel these are accurate); and transparency throughout the research process (see Table 8 )[ 8 , 18 – 21 , 23 , 26 ]. Transparency can be achieved by describing in detail the steps involved in case selection, data collection, the reasons for the particular methods chosen, and the researcher's background and level of involvement (i.e. being explicit about how the researcher has influenced data collection and interpretation). Seeking potential, alternative explanations, and being explicit about how interpretations and conclusions were reached, help readers to judge the trustworthiness of the case study report. Stake provides a critique checklist for a case study report (Table 9 )[ 8 ].

Conclusions

The case study approach allows, amongst other things, critical events, interventions, policy developments and programme-based service reforms to be studied in detail in a real-life context. It should therefore be considered when an experimental design is either inappropriate to answer the research questions posed or impossible to undertake. Considering the frequency with which implementations of innovations are now taking place in healthcare settings and how well the case study approach lends itself to in-depth, complex health service research, we believe this approach should be more widely considered by researchers. Though inherently challenging, the research case study can, if carefully conceptualised and thoughtfully undertaken and reported, yield powerful insights into many important aspects of health and healthcare delivery.

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Acknowledgements

We are grateful to the participants and colleagues who contributed to the individual case studies that we have drawn on. This work received no direct funding, but it has been informed by projects funded by Asthma UK, the NHS Service Delivery Organisation, NHS Connecting for Health Evaluation Programme, and Patient Safety Research Portfolio. We would also like to thank the expert reviewers for their insightful and constructive feedback. Our thanks are also due to Dr. Allison Worth who commented on an earlier draft of this manuscript.

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AS conceived this article. SC, KC and AR wrote this paper with GH, AA and AS all commenting on various drafts. SC and AS are guarantors.

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01 Aug 2023

Can Business Transform Primary Health Care Across Africa?

mPharma, headquartered in Ghana, is trying to create the largest pan-African health care company. Their mission is to provide primary care and a reliable and fairly priced supply of drugs in the nine African countries where they operate. Co-founder and CEO Gregory Rockson needs to decide which component of strategy to prioritize in the next three years. His options include launching a telemedicine program, expanding his pharmacies across the continent, and creating a new payment program to cover the cost of common medications. Rockson cares deeply about health equity, but his venture capital-financed company also must be profitable. Which option should he focus on expanding? Harvard Business School Professor Regina Herzlinger and case protagonist Gregory Rockson discuss the important role business plays in improving health care in the case, “mPharma: Scaling Access to Affordable Primary Care in Africa.”

25 Jul 2023

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23 Jun 2023

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09 May 2023

Can Robin Williams’ Son Help Other Families Heal Addiction and Depression?

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26 Apr 2023

How Martine Rothblatt Started a Company to Save Her Daughter

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25 Apr 2023

Using Design Thinking to Invent a Low-Cost Prosthesis for Land Mine Victims

Bhagwan Mahaveer Viklang Sahayata Samiti (BMVSS) is an Indian nonprofit famous for creating low-cost prosthetics, like the Jaipur Foot and the Stanford-Jaipur Knee. Known for its patient-centric culture and its focus on innovation, BMVSS has assisted more than one million people, including many land mine survivors. How can founder D.R. Mehta devise a strategy that will ensure the financial sustainability of BMVSS while sustaining its human impact well into the future? Harvard Business School Dean Srikant Datar discusses the importance of design thinking in ensuring a culture of innovation in his case, “BMVSS: Changing Lives, One Jaipur Limb at a Time.”

31 Mar 2023

Can a ‘Basic Bundle’ of Health Insurance Cure Coverage Gaps and Spur Innovation?

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13 Mar 2023

The Power of Personal Connections: How Shared Experiences Boost Performance

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14 Feb 2023

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10 Feb 2023

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Social networks have been criticized for spreading COVID-19 misinformation, but the platforms have also helped public health agencies spread the word on vaccines, says research by Michael Luca and colleagues. What does this mean for the next pandemic?

12 Dec 2022

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06 Sep 2022

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22 Aug 2022

Can Amazon Remake Health Care?

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24 Mar 2022

Why Cutting Jobless Aid Isn't the Answer to Worker Shortages

Many policymakers thought that halting COVID-related unemployment insurance would be a "silver bullet" to addressing worker shortages. In reality, cutting aid undermined consumer spending, says research by Raymond Kluender. Open for comment; 0 Comments.

Volume 11 Supplement 2

Global health research case studies: lessons from partnerships addressing health inequities

Introduction
Open access
Published: 08 November 2011
Zoë Boutilier 1 ,
Ibrahim Daibes 1 &
Erica Di Ruggiero 2

BMC International Health and Human Rights volume 11 , Article number: S2 ( 2011 ) Cite this article

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Inspiration for compiling this collection of case studies comes from the Global Health Research Initiative’s (GHRI) commitment to conceptualizing and supporting global health research as a practice with increasingly discernable core characteristics. Through an exploration of these characteristics, the collection highlights practical, relevant and transferable lessons for consideration by researchers, their research-user partners, and donors working to address health inequities through global health research partnerships. The value of global health research partnerships is illustrated through the achievements of the collaborations featured in this collection.

The ten case studies included in this collection do not describe individual research projects. Instead, they each provide an in-depth account of a defined program of research that acts as a platform for theoretically linked research projects. The programs are an integrated blend of knowledge generation, capacity building, and knowledge translation activities that have evolved towards increasing complexity and sophistication. In particular, attention to capacity building and knowledge translation increases as the programs mature over time. The programs of research are animated by a core alliance of individuals whose international partnerships are rooted in mutual trust and the articulation of a common goal: health equity.

The cases presented in this collection are concerned with health inequities experienced by certain population groups. For example, the two cases set in South Asia (Haddad et al., Mumtaz et al.) are both concerned with the persistent health inequities that are experienced by lower-caste women belonging to marginalized indigenous groups. Another disadvantaged population group highlighted twice in this collection is people living with HIV/AIDS in rural Sub-Saharan Africa (Kipp et al., Sodhi et al.). A third group, Ecuadorians with limited resources who are vulnerable to environmental degradation and to acute pesticide poisoning, is also highlighted twice in this collection (Spiegel et al., Cole et al.). All of these groups face persistent social and health inequities that have “both historical roots and present day causes” (Cole et al.).

This collection features partnerships that include Canadian researchers. This is in part not accidental given that these cases were compiled by Canada’s Global Health Research Initiative (GHRI), a partnership between five Canadian government agencies that are responsible for health, health research and international development (the International Development Research Centre, the Canadian Institutes of Health Research, Health Canada, the Canadian International Development Agency, and the Public Health Agency of Canada). Over the past ten years, GHRI has sought to understand the characteristics of effective global health research and to create an environment that is conducive to its successful conduct. While the programs described in this collection are not all directly supported by GHRI, they share characteristics that are common to the programs of research supported by GHRI. We emphasize these characteristics here because we believe that they are core to the practice of global health research. The practice of global health research as described in these case studies and as supported by GHRI is characterized by:

1) long-term and sustainable North-South partnerships;

2) interdisciplinary responses to complex issues;

3) participatory action research that grounds the research in its context; and

4) research with a policy or practice impact orientation.

In this introductory essay we elaborate on each of these characteristics. We also take this opportunity to highlight some of the commendable achievements of the partnerships. At the same time, we do not neglect to expand on the challenges that face global health research partnerships, nor fail to recognize the systemic barriers that too often confine researchers, research-users, and donors.

Long-term, sustainable North-South partnerships

The complexity of health issues addressed by global health research programs necessitates long-term visions and timelines. On average, the partnerships described herein have been in existence for just short of a decade; in two cases the partnership has been in existence for almost a decade and a half (Haddad et al., Kipp et al.). This commitment to long-term, North-South partnerships is significant given that political, institutional, and professional priorities tend to change with time. Literature on North-South partnerships is often pessimistic about the prospects for partnership sustainability, with repeated references to pervasive power imbalances in agenda-setting, in funding sources, and in allegiance to methodologies and scientific traditions [ 1 – 3 ]. These and other issues present an ongoing challenge to attempts to establish and maintain long-term North-South research partnerships. Despite these challenges, the case studies in this collection demonstrate that partnerships of this kind can not only be sustained, but can thrive.

The sustainability of these partnerships might be a product – or a cause – of a continued evolution in sophistication and approach. In the case of Delisle et al., the process of exploring the initial research questions and assumptions led to new ones that needed to be tested. The generation of scientific knowledge, often the initial impetus for the partnership, was enhanced over time by an increasing investment in capacity building and knowledge translation activities. In the words of Haddad et al., “The initial focus on survey-based research and data analysis gradually transformed in the direction of understanding local governance, political analysis, marginalization, gender and empowerment” [ 4 ]. In most of the cases, the overall program of research systematically emerged from its component parts. For example, Cole et al. describe their progression through three distinctly-funded projects (‘EcoHealth II’ funded from 2005 to 2008, ‘Healthy Horticulture’ funded from 2007 to 2010, and ‘Social Capital and Accountability’ funded from 2008 to 2011). Each project was designed to build on the last; not just in terms of the scientific knowledge generated, but also in terms of the human capacity developed and the impact on policy and practice. Similarly, Spiegel et al. describe the phases that made up their Ecuador EcoHealth program: a nationally-accredited ‘train-the-trainers’ Master’s program led to the establishment of other Masters programs and eventually to the launch of an innovative doctoral program. The evolution of the research program seems to reflect an evolving understanding of the problem, a greater appreciation for nuances and context, and the consolidation of the numerous relationships that must be in place for the purposes of credibility.

Another key similarity that links these longstanding, multi-stage, and evolving programs of research is their success in attracting funds from different sources over time. This may seem obvious, given that many of these partnerships have been in existence for almost a decade and given that donors generally do not commit to ten year timelines. It is instructive nonetheless to observe that these programs of research were sufficiently multi-faceted and compelling to be supported by a series of different donors, each with unique (albeit sometimes overlapping) mandates. The research program of Yassi et al. is one good example, having received at various times support from sources including (but not limited to) the Canadian Institutes of Health Research (CIHR), the Canada Research Chairs program, the Canada Foundation for Innovation (CFI), the International Development Research Centre (IDRC), the Canadian International Development Agency (CIDA) and Health Canada (HC). Likewise, the program of Ridde et al. received funding from IDRC (through its Research for Health Equity program), from GHRI (through its Africa Health Systems Initiative program), and from CIHR (through its New Investigators program). It is apparent, therefore, that long-term partnerships have the ability to supersede and outlast their current funding arrangements when they have a coherent and compelling motivation that both keeps them together during periods of financial uncertainty, and renders them fundable across a spectrum of donors.

Interdisciplinary responses to complex issues

The majority of the research partnerships featured in this supplement are, or strive to be, interdisciplinary both in their composition and in their approach to problem solving. We see, for example, partnerships that join development economists with physicians (Haddad et al.), biostatisticians with nurses (Kipp et al.), and infectious disease biologists with occupational health professionals (Yassi et al.). We also see partnerships that embrace qualitative and quantitative researchers, researchers and decision-makers, established and junior researchers, and academics and activists. Adding yet another layer of complexity, most of the partnerships featured here involve members from far-flung geographic regions and different cultural backgrounds. Spiegel et al. sum up all of these dimensions, when they explain that “knowledge sharing has fundamentally taken place within the dynamic of difference…three or more cultures, half a dozen disciplines, distinct paradigms, (and) three languages…” [ 5 ]. If the partnerships described in this supplement are representative of the wider field of global health research, it is clear that an interdisciplinary perspective is indeed a core characteristic of global health research.

Interdisciplinary approaches are characterized by the engagement of researchers from different disciplines in understanding and engaging in all components of a study and in sharing their different viewpoints regarding results and interpretations [ 6 ]. Interdisciplinary approaches are therefore considered more likely to lead to learning that goes beyond “additive” learning [ 7 ] and more likely to produce solutions that will have traction in the messiness of the real world. This view is reflected in some of the cases of this collection. Haddad et al. explain a process whereby the strengths of the two team leaders became mutually complementary, and then were further enhanced by the addition of different disciplines to the team, such that “the project became a crucible of intense learning, sending a strong message to the Canadian team that the narrow boundaries of economics had to be transcended to understand social systems with diverse caste and religious identities” [ 4 ].

Why is global health research a practice that causes its participants to strive to break down silos on so many fronts? Upon close reading, these articles suggest that at least part of the motivation lies in matching the means to the problem and to the end. In other words, research teams must be interdisciplinary in order to process and tackle the complex nature of global health issues, and their necessarily multi-faceted solutions. This is an era in which the inter-related socio-economic determinants of health are recognized but imperfectly understood [ 8 , 9 ]. Indeed, global health has been described as a ‘composite’ field; one that comprises biological, clinical and social health and is complemented by other disciplines such as engineering and political science [ 10 ]. Per force, the problems faced by global health partnerships are profoundly complex. Now more than ever, global health research requires the bridging of traditional divisions between disciplines in order to innovatively protect and promote health for all people [ 10 , 11 ].

While the bridging of disciplines is a fine theoretical ideal, how possible is this in the everyday reality of global health research programs? Both the literature and the experiences of these teams suggest that there are common impediments as well as key facilitating factors. At least one impediment stems from the possibly incompatible core values of different epistemological traditions. The depth of difference between traditions can often be appreciated in the downstream difficulty of reconciling different research methodologies. Beliefs and values about what constitutes sound research are often grounded in epistemologies and expressed in methodological approaches [ 12 , 13 ]. As explained by Ridde et al.:

“The challenges involved in the partnership …were more of an interdisciplinary nature than about North-South differences…the focus was on complementarity of theoretical and methodological approaches. For example, anthropologists most often use a very inductive process in conducting their research, whereas researchers in evaluation and public health generally organize their data using an analytical framework.” [ 14 ]

It follows then that in addition to linguistic bilingualism, global health research partnerships often strive for “methodological bilingualism”; a bilingualism that requires a minimum competency from all team members in each of the research methods [ 15 ]. Otherwise, researchers from various traditions find themselves at worse talking mutually incomprehensible methodological languages; and at best, producing ‘parallel’ results that fail to be integrated.

Participatory action research

The case studies in this collection present a variety of experiences with participatory action research. Participatory action research involves a commitment to both study a system and to collaborate with members of that system to bring about desired change [ 16 ]. It demands the active collaboration of all stakeholders, leading ideally to a blurring of traditional roles defining “researcher” and “researched” and to an equal partnership between researchers and community stakeholders [ 17 ]. Theoretically, participatory action research involves all potential users of the research in the formulation, conduct, and application of the research and the research occurs in phased cycles (problem diagnosis, action planning, taking action, evaluating the actions, incorporating lessons, repeat) [ 18 , 19 ].

The phased-cycle nature of participatory action research is demonstrated in a number of the case studies. Cole et al. describe their decade-long program of research as a series of “iterative cycles of mixed methods research around particular questions, actions relevant to stakeholders, new proposal formulation and implementation followed by evaluation of impacts” [ 20 ]. A number of the partnerships initially worked together on fairly straightforward epidemiological surveys; and gradually moved towards a participatory action research orientation. This is exemplified by Spiegel et al., who describe moving from research for inquiry’s sake to impact-oriented investigation while maintaining rigor in methods. Similarly, Deslisle et al. reflect on the evolution of their program of research, in which “progress is being made in the type of research, impacts and partnership” [ 21 ]. All of this suggests that an enhanced degree of maturity is important for successful participatory action research. Maturity (in terms of the relationship between the primary research collaborators, the relationship between the researchers and the community stakeholders, and a nuanced understanding of the setting) and a willingness to invest in a phased-cycle of action and reflection are factors that privilege the uptake and the likely success of participatory action research.

It can be inferred from the case studies of this collection that a commitment to the ideals of participatory action research is often difficult to apply. The very complex confluence of sociocultural factors that contributed to the existing health inequities will not instantly dissipate in the face of even the best-designed action research intervention. As Cole et al. explain,

“Our research-action process sought to address (the underlying causes of health inequities)… but was constrained by them. During EcoSalud II interventions, vertical approaches to community leadership excluded broader social participation and limited some community members’ access…” [ 20 ].

A look at the relevant literature reveals some healthy skepticism about another fundamental tenet of participatory action research: the requirement of equal partnerships between researchers and community stakeholders. It has been pointed out that many action research projects, described as participatory, actually use differing levels of collaboration at distinct stages of the research. For example, community stakeholders may be more involved in diagnosing the problem and in taking action, but less involved in the analysis and writing of the findings [ 22 ]. Some argue that “dragging” participants through all of the research process is unjustified, as long as said participants help define the research questions and then eventually help to interpret the findings [ 18 ]. When the concept of community stakeholders is widened to include not just a single geographically defined human settlement, but also other groups of people such as health practitioners and policy makers, the challenges to full and equal stakeholder participation become ever greater.

Research with a policy or practice impact orientation

Scholarly publishing is recognized as a measure of excellence in research. Global health research is certainly no exception. However, our experience in global health research reinforced by the case studies presented herein indicates that publishing alone is not sufficient. Taking action on modifiable determinants that affect health and health equity, and converting new knowledge into improved policies and programs are fundamental components of global health research. That is why, throughout this collection, the reader will notice the authors continually referring to the impact orientation of their work. As expressed by Delisle et al.; “The global health field owes it to itself to not only generate new knowledge and information but also to contribute to a population’s well-being” [ 21 ].

Through their storytelling the authors demonstrate the difficult and often capricious nature of knowledge translation. As such, the authors confirm known wisdom about the non-formulaic nature of policymaking and the sheer volume of factors that can influence the uptake of knowledge gleaned from research [ 23 – 26 ]. While each case study offers program-specific introspection about the factors governing policy and practice influence, overall the collection illuminates no pattern or best practice. In the world of policy and practice change, “outright success in terms of achieving specific, hoped-for change is rare, and the work that does influence policy is often unique and rarely repeated…” [ 27 ].

In this collection, only a few of the case studies describe situations in which the research provoked a traceable influence on policy at the national level. In their case study, Delisle et al. point to the influence of their research on policy and on practice at a national level in two countries.

“We believe that, because of our work, at least partly, nutrition related chronic diseases (NRCD) are being taken into account in Benin’s 2007 – 2016 National Health Development Plan…(and)…the primary education department in Burkina Faso is now considering introducing school lunch and nutrition programs not only in rural schools but also in urban schools…” [ 21 ]

The authors’ reluctance to claim direct sole responsibility for these changes points to a reality which complicates the lives of global health researchers and their donors—the “attribution problem” [ 27 , 28 ]. The causes of change (or stasis) in policy and practice are difficult to predict ahead of time and are often just as challenging to isolate and identify after the fact. This seems particularly true of the highest levels of government, as suggested by Cole et al., who describe the effort that was required from multiple civil society actors in order to restrict the use of hazardous pesticides in Ecuador. Thus the majority of the case studies in this supplement concentrate on describing changes that occurred in practice, and often at a very local level. These local changes in practice are often more tangible and a causal link can be more accurately attributed to the given research program.

Some of the case studies in this collection describe research that resulted in little or no discernable change to date. The case study of Mumtaz et al., for example, underlines the limitations of research when it confronts the more intractable and intransigent aspects of human society. In this case, relevant - and emotionally powerful -knowledge about gender inequities was generated. However, policymakers were not ready to address the deep-rooted ramifications of this knowledge. Because knowledge translation was a stated key objective of the research, the researchers had developed direct and ongoing engagement with government policymakers, who in turn expressed appreciation of the research results and saw them as important contributions to knowledge gaps. Despite these promising acknowledgements, however, policymakers have been unable to use the research results because “it is difficult for them to address the deep-seated … inequalities” [ 29 ].

Concluding comments

It is in keeping with the nature of modern times that the practice of global health research defies tidy definition, as it grows and morphs and adapts on a continuous basis. For this reason, rather than exploring competing definitions we have preferred in this essay to deepen our understanding of global health research by examining some of the core characteristics that link ten exemplary global health partnerships. The core characteristics that we have chosen to explore (long-term partnerships, interdisciplinary approaches, participatory action research, and impact orientation) are simply those that are illustrated most vividly across the ten case studies. This is not intended to provide an exhaustive list nor a conclusive characterization of the practice of global health research. Furthermore, a listing of these four as separate characteristics risks over-simplification, since each is interwoven with the others. For example, the phased-cycle nature of participatory action research often demands long timeframes and thus long-term partnerships. Likewise, a desire to influence policy and practice requires that health researchers also understand socio-political contexts, and thus adopt interdisciplinary approaches.

In this essay we have not elaborated on the commendable achievements of this collection of partnerships. On this point, the case studies speak most eloquently for themselves. In describing long-term research programs as opposed to short-term discrete research projects, each set of authors has showcased the value and the potential of global health research partnerships.

We remain curious as to the applicability of our conceptualization of global health and global health research’s core characteristics. Does this collection of case studies represent a uniquely Canadian ‘take’ on global health research? Given that each partnership featured here is a mix of Canadian and international colleagues, and given that the partnerships have been described as egalitarian and mutually respectful, it follows that these case studies can be said to represent a ‘global’ approach to global health research. That said, it is also true that the research featured here is funded at least partially from Canadian sources, and thus might reflect the programming principles, priorities and concerns of these donors. We remain open to the idea that other collections of global health case studies, compiled using different criteria, might yield different visions about what characterises the practice of global health research.

Semantics, definitions, and core characteristics aside: at essence, this collection is a spirit-lifting demonstration that many people are incapable of living ‘life as usual’ when this requires ignoring the social injustices suffered by others. Furthermore, this collection is a demonstration that people are capable of joining forces across cultures, disciplines and sectors to forge long-term commitments to programs of research and real-world impact.

Abbreviations

Global Health Research Initiative

Human Immunodeficiency Virus / Acquired Immune Deficiency Syndrome

Canadian Institutes of Health Research

Canada Foundation for Innovation

International Development Research Centre

Canadian International Development Agency

Health Canada

nutrition related chronic disease

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Acknowledgement

The authors would like to acknowledge the contribution of the GHRI Casebook Advisory Committee, who provided valuable advice and support to this process (Susan Godt, Nadia Hamel, Thomas Kibua, and Stephen Trott). We are particularly grateful to the external reviewers who contributed their time to undertake extensive peer review of these articles. Thanks to Anna Dion and Marc Cohen, who coordinated the earliest stages of collecting the case studies and coordinating the peer review. Thanks also to Ashley Page and Manon Therien, who provided the indispensible administrative coordination that allowed this project to move forward.

This article has been published as part of BMC International Health & Human Rights Volume 11 Supplement 2, 2011: Global health research case studies: lessons from partnerships addressing health inequities. The full contents of the supplement are available online at http://www.biomedcentral.com/1472-698X/11?issue=S2 .

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Zoë Boutilier & Ibrahim Daibes

Institute of Population and Public Health, Canadian Institutes of Health Research, 600 Peter Morand Crescent, Suite 312, Ottawa, Canada

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Correspondence to Zoë Boutilier .

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Zoë Boutilier and Ibrahim Daibes serve as Program Officer and Senior Program Specialist, respectively, for the Global Health Research Initiative. Erica Di Ruggiero serves on the steering committee of the Global Health Research Initiative. The Global Health Research Initiative supported the assembly and publication of this supplement. The views expressed in this introductory article are those of the authors alone and do not represent the views of the Global Health Research Initiative (GHRI), the International Development Centre (IDRC), nor the Canadian Institutes of Health Research (CIHR).

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Boutilier, Z., Daibes, I. & Di Ruggiero, E. Global health research case studies: lessons from partnerships addressing health inequities. BMC Int Health Hum Rights 11 (Suppl 2), S2 (2011). https://doi.org/10.1186/1472-698X-11-S2-S2

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Roberta Heale 1 ,
Alison Twycross 2
1 School of Nursing , Laurentian University , Sudbury , Ontario , Canada
2 School of Health and Social Care , London South Bank University , London , UK
Correspondence to Dr Roberta Heale, School of Nursing, Laurentian University, Sudbury, ON P3E2C6, Canada; rheale{at}laurentian.ca

https://doi.org/10.1136/eb-2017-102845

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What is it?

Case study is a research methodology, typically seen in social and life sciences. There is no one definition of case study research. 1 However, very simply… ‘a case study can be defined as an intensive study about a person, a group of people or a unit, which is aimed to generalize over several units’. 1 A case study has also been described as an intensive, systematic investigation of a single individual, group, community or some other unit in which the researcher examines in-depth data relating to several variables. 2

Often there are several similar cases to consider such as educational or social service programmes that are delivered from a number of locations. Although similar, they are complex and have unique features. In these circumstances, the evaluation of several, similar cases will provide a better answer to a research question than if only one case is examined, hence the multiple-case study. Stake asserts that the cases are grouped and viewed as one entity, called the quintain . 6 ‘We study what is similar and different about the cases to understand the quintain better’. 6

The steps when using case study methodology are the same as for other types of research. 6 The first step is defining the single case or identifying a group of similar cases that can then be incorporated into a multiple-case study. A search to determine what is known about the case(s) is typically conducted. This may include a review of the literature, grey literature, media, reports and more, which serves to establish a basic understanding of the cases and informs the development of research questions. Data in case studies are often, but not exclusively, qualitative in nature. In multiple-case studies, analysis within cases and across cases is conducted. Themes arise from the analyses and assertions about the cases as a whole, or the quintain, emerge. 6

Benefits and limitations of case studies

If a researcher wants to study a specific phenomenon arising from a particular entity, then a single-case study is warranted and will allow for a in-depth understanding of the single phenomenon and, as discussed above, would involve collecting several different types of data. This is illustrated in example 1 below.

Using a multiple-case research study allows for a more in-depth understanding of the cases as a unit, through comparison of similarities and differences of the individual cases embedded within the quintain. Evidence arising from multiple-case studies is often stronger and more reliable than from single-case research. Multiple-case studies allow for more comprehensive exploration of research questions and theory development. 6

Despite the advantages of case studies, there are limitations. The sheer volume of data is difficult to organise and data analysis and integration strategies need to be carefully thought through. There is also sometimes a temptation to veer away from the research focus. 2 Reporting of findings from multiple-case research studies is also challenging at times, 1 particularly in relation to the word limits for some journal papers.

Examples of case studies

Example 1: nurses’ paediatric pain management practices.

One of the authors of this paper (AT) has used a case study approach to explore nurses’ paediatric pain management practices. This involved collecting several datasets:

Observational data to gain a picture about actual pain management practices.

Questionnaire data about nurses’ knowledge about paediatric pain management practices and how well they felt they managed pain in children.

Questionnaire data about how critical nurses perceived pain management tasks to be.

These datasets were analysed separately and then compared 7–9 and demonstrated that nurses’ level of theoretical did not impact on the quality of their pain management practices. 7 Nor did individual nurse’s perceptions of how critical a task was effect the likelihood of them carrying out this task in practice. 8 There was also a difference in self-reported and observed practices 9 ; actual (observed) practices did not confirm to best practice guidelines, whereas self-reported practices tended to.

Example 2: quality of care for complex patients at Nurse Practitioner-Led Clinics (NPLCs)

The other author of this paper (RH) has conducted a multiple-case study to determine the quality of care for patients with complex clinical presentations in NPLCs in Ontario, Canada. 10 Five NPLCs served as individual cases that, together, represented the quatrain. Three types of data were collected including:

Review of documentation related to the NPLC model (media, annual reports, research articles, grey literature and regulatory legislation).

Interviews with nurse practitioners (NPs) practising at the five NPLCs to determine their perceptions of the impact of the NPLC model on the quality of care provided to patients with multimorbidity.

Chart audits conducted at the five NPLCs to determine the extent to which evidence-based guidelines were followed for patients with diabetes and at least one other chronic condition.

The three sources of data collected from the five NPLCs were analysed and themes arose related to the quality of care for complex patients at NPLCs. The multiple-case study confirmed that nurse practitioners are the primary care providers at the NPLCs, and this positively impacts the quality of care for patients with multimorbidity. Healthcare policy, such as lack of an increase in salary for NPs for 10 years, has resulted in issues in recruitment and retention of NPs at NPLCs. This, along with insufficient resources in the communities where NPLCs are located and high patient vulnerability at NPLCs, have a negative impact on the quality of care. 10

These examples illustrate how collecting data about a single case or multiple cases helps us to better understand the phenomenon in question. Case study methodology serves to provide a framework for evaluation and analysis of complex issues. It shines a light on the holistic nature of nursing practice and offers a perspective that informs improved patient care.

Gustafsson J
Calanzaro M
Sandelowski M

Competing interests None declared.

Provenance and peer review Commissioned; internally peer reviewed.

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Advanced Case Study Between Sept. 30th and Oct. 14th, 2010, students and residents all over the world gathered in interprofessional teams and analyzed a complex incident that resulted in patient harm. Selected teams presented their work to IHI faculty during a series of live webinars in October.
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What Happened to Alex? Alex James was a runner, like his dad. One day, he collapsed during a run and was hospitalized for five days. He went through lots of tests, but was given a clean bill of health. Then, a month later, he collapsed again, fell into a deep coma, and died. His father wanted to know — what had gone wrong? Dr. John James, a retired toxicologist at NASA, tells the story of how he uncovered the cause of his son’s death and became a patient safety advocate.
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Find case studies on topics in health care and biotechnology ethics, including end-of-life care, clinical ethics, pandemics, culturally competent care, vulnerable patient populations, and other topics in bioethics. (For permission to reprint cases, submit requests to [email protected] .)

Cases can also be viewed by the following categories:

An obstetrician treating a heroin-addicted mother considers whether to comply with state law requiring medical professionals to report drug-addicted pregnant women to law enforcement for child endangerment.

A drug treatment counselor considers whether to allow a patient a second chance in the drug-treatment program, against stated program rules.

A religious cleric considers how to support a member of the community struggling with depression and alcoholism, who declines recommended referral to expert medical treatment.

A primary care physician considers if s/he can competently provide treatment to a patient who may have a serious psychiatric disorder and does not wish to go to another doctor.

A physician considers whether to honor a promising medical student’s request to withhold a diagnosis of depression from her record. The medical student fears a record of depression could hurt her career.

A psychologist considers whether there is a duty to warn a couple whom the jealous patient has expressed a desire to stalk and frighten.

An adolescent medicine physician considers how to help a potentially suicidal non-minor young adult who declines treatment. Potential options include the possibility of petitioning the court to coerce inpatient treatment.

A psychiatrist considers whether to use a placebo (a fake treatment) on a patient whom the clinician thinks might benefit.

While organ donation is necessary to alleviate suffering and save lives, questions of autonomy, coercion, and the yuk factor deserve careful consideration as we seek to increase supply in the face of unrelenting demand.

Is it ethical to eliminate native populations of disease-carrying pests through genetic manipulation?

Ethical Issues in Community and Patient Stakeholder–Engaged Health Research

© 2023
Emily E. Anderson ORCID: https://orcid.org/0000-0003-2197-1239 0

Neiswanger Institute for Bioethics, Stritch School of Medicine, Loyola University Chicago, Maywood, USA

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First book to cover the full range of ethical issues related to a variety of different forms of stakeholder engagement
Contains case studies highlighting unique issues that arise in stakeholder engagement relevant to different populations
Synthesizes current conversations, best practices, and future directions in stakeholder–engaged health research

Part of the book series: Philosophy and Medicine (PHME, volume 146)

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Table of contents (20 chapters)

Front matter, introduction: what we talk about when we talk about the ethics of engaging patient and community stakeholders in health research.

Emily E. Anderson

Theorizing Participatory Research

Andrew Evans, Angela Potochnik

An Evolving Ethical Framework for Patient and Community-Engaged Research

Lisa Mikesell

Beyond Good Intentions: Principles for Anti-racist Community-Engaged Research

Alexis Grant, Andrea L. DaViera

Demystifying How Academic-Community Partnerships Use Reflexivity and Praxis to Promote Participatory Research Principles of Equity and Justice

Jeni Hebert-Beirne, Sylvia Gonzalez, Melissa Chrusfield, Adlaide Holloway, Jennifer Plascencia Lopez, Dolores Castañeda

Reflexivity: A Strategy for Ethics- and Values-Driven Community Partnerships in Mental Health

Tommy Chou, Stacy L. Frazier

In the Field

How do you define community and why is it important.

Laurene Tumiel-Berhalter, Linda Kahn

Community Researchers and Ethical Considerations: Burdens in the Field

Maghboeba Mosavel, Briona Phillips

Community-Engaged Research with People with Developmental Disabilities: A Conversation with Community Researchers about their Ethical Inclusion

Brendan Durkin, Micah Fialka-Feldman, Jacob Myers, Ariel Schwartz, Katherine McDonald

Community Conversations about Culturally Responsive Health Research for African American Communities

Adina Black, Millicent Robinson, Paige Castro-Reyes, Al Richmond, Latajah Lassus, Nancy Shore

The Power of Personal Narrative: My Experience with SACHRP, the FDA, and Bioethics

Gianna McMillan

Unique Ethical Considerations

Patient advocacy organizations and conflicts of interest in research.

Lisa Parker, Barbara Mintzes

Representing and Protecting: Gatekeepers in Community-Engaged Research

Ryan Spellecy

Paying Research Participants and Community and Patient Research Partners: An Engaging Ethical Issue

Lisa Ballance, Elizabeth Ripley

Rethinking Risks and Benefits in Stakeholder-Engaged Research: Lessons from HIV, Substance Use, and Sexual Health Research with Marginalized Communities

Adrian Guta, Peter A. Newman, Adam Bourne

Data Decisions and Ethics: The Case of Stakeholder-Engaged Research

Melody S. Goodman, Kristyn A. Pierce, James M. DuBois, Vetta Sanders Thompson
Community-engaged Research
history of codes of ethics
epistemology and stakeholder engagement
the Belmont principle
CIOMS Ethical guidelines
philosophy of patient engagement
promoting equitable collaboration
stakeholder voices in healthcare
human research protections

About this book

This book provides in-depth analyses of a wide range of topics surrounding ethical issues in community and patient stakeholder–engaged health research, and highlights where consensus exists, is emerging, or remains elusive. Topics in this book cover the history of stakeholder engagement in health research; how codes of ethics and regulations have (or have not) addressed stakeholder engagement; how to promote equitable collaboration; the ethical perspectives of different stakeholders; and the unique challenges posed by stakeholder- engaged research to the protection of human research participants and the research ethics review process. The book includes discussion of unique issues that arise in stakeholder engagement relevant to different populations, settings, and research designs. This book is relevant for anyone with a role or interest in stakeholder-engaged research, including patient and community research partners; academic researchers; research ethics scholars and educators; and funders.

Editors and Affiliations

About the editor.

Emily E. Anderson, PhD, MPH, is Professor in the Neiswanger Institute for Bioethics and Healthcare Leadership at Loyola University Chicago’s Stritch School of Medicine. Dr. Anderson holds a PhD in health care ethics from Saint Louis University and an MPH from University of Illinois Chicago. She teaches courses on research ethics and responsible conduct of research to bioethics and biomedical sciences graduate students as well as medical students. In addition to the ethics of stakeholder engagement in research, her areas of interest and expertise include researcher and physician professionalism and misconduct; ethical issues in research with vulnerable populations; informed consent; institutional review board (IRB) policy; and the application of qualitative research techniques to the study of research ethics. She has published over 50 articles in top journals including the American Journal of Bioethics, Journal of Law, Medicine, and Ethics, Academic Medicine, and IRB: Ethics & Human Research. Dr. Anderson currently serves as associate editor of Narrative Inquiry in Bioethics . Dr. Anderson has been a co-investigator on several federally-funded research and educational projects and recently co-authored the book 100 Questions and Answers about Research Ethics (Sage Publications, 2018) with Dr. Amy Corneli (at Duke University).

Bibliographic Information

Book Title : Ethical Issues in Community and Patient Stakeholder–Engaged Health Research

Editors : Emily E. Anderson

Series Title : Philosophy and Medicine

DOI : https://doi.org/10.1007/978-3-031-40379-8

Publisher : Springer Cham

eBook Packages : Religion and Philosophy , Philosophy and Religion (R0)

Copyright Information : The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023

Hardcover ISBN : 978-3-031-40378-1 Published: 02 October 2023

Softcover ISBN : 978-3-031-40381-1 Due: 31 October 2023

eBook ISBN : 978-3-031-40379-8 Published: 29 September 2023

Series ISSN : 0376-7418

Series E-ISSN : 2215-0080

Edition Number : 1

Number of Pages : XVI, 327

Number of Illustrations : 1 b/w illustrations

Topics : Ethics , Medicine/Public Health, general , Public Health , Community and Environmental Psychology

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Struggled with: Abuse Depression Eating disorder Suicidal

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My Journey From Hitting Rock Bottom to Overcoming Abuse, Addiction, and Eating Disorder

“Then something happened. On about day 3 or 4, the group spoke and I realized that their way of thinking around food, their rituals, and their tendencies, were all the same as the things I would do. It was wild because I thought I had made these things up myself and here I was with a room full of people who did the same things.”

Struggled with: Abuse Bullying Depression Divorce Eating disorder PTSD

Helped by: Self-Care Social support Therapy Treatment

May 2, 2024

How Yoga Became My Lifeline in Navigating Depression and Building Self-Love

“My relationship with myself was pretty broken and I had no self-belief, I had low self-esteem and I resented my family. It was through yoga that I found the truest feeling of comfort, self-compassion, and courage to move forward, grow as a person, and fall back in love with myself and life again.”

Struggled with: Depression Insomnia Stress Suicidal

Helped by: Exercise Meditation Mindfulness Self-Care

April 30, 2024

Finding Clarity After an ADHD Diagnosis and Bettering Myself With CBT and Medication

“Now as I was getting older, I felt I couldn’t trust my own thoughts in the same way as before, and self-doubt would creep in. I would constantly ask myself whether my emotions and thoughts were accurate or not when reacting to social situations. As you can imagine this was a huge challenge and draining emotionally.”

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Students’ passion projects address big issues in healthcare

Kate Ledger

‘I wanted to do something about it’

Hayes' research in the lab of David Daniels, M.D., Ph.D. , studies tumors known as diffuse midline gliomas (DMGs). For children diagnosed with the disease, the prognosis is grim. Spending time in the lab, Hayes realized, "We don't have a lack of ideas, and it's not that we're stuck. The issue is that research is expensive, and we'll never make a dent without funding."

She adds, "I didn't want to sit around and complain about it. I wanted to do something about it."

Hayes, who has been blind since early childhood, had an undergraduate degree in business that prepared her for fundraising. Through online courses she learned web design to create the foundation's website. She read additional medical journal articles about DMG and reached out to families whose children have been affected by it. And she dove into more than 100 pages of government paperwork required to launch a 503(c)(3).

The foundation she established, KIDS MATER TOO, raises money that will go directly to DMG research projects – at Mayo and elsewhere. (The name of the foundation is not a misspelling; it's a play on words about the protective layers that cover the brain, like the dura mater.) The allocation of the funds is determined by a scientific review board, using a double-blind peer-review process to ensure objectivity.

"Charlotte's proactive and altruistic stance demonstrates the positive transformative power one individual can have on society," says Luis Lujan, Ph.D. , associate dean of student affairs. "Her efforts reflect the commitment of our students to affect positive change, which is in line with the values of Mayo Clinic and the Graduate School of Biomedical Sciences."

Hayes also has gotten other graduate students involved in her group's administration. "At this stage," says Hayes, "I'm focused on establishing meaningful relationships with donors, spreading awareness about the disease and continuing my own research. It's been time consuming and tiring, but I would do it all again."

Motivating others to succeed

Back when he was applying to medical school, JR Smith came across a statistic that made an impression on him. "I read that there were more Black men applying and matriculating to medical school in the 1970s than there are today," he says.

One factor contributing to the drop-off, he believed, was an ongoing lack of visual representation of Black men in medicine. He felt he could change that. As he progressed through the medical school application process, he documented his own journey on YouTube.

"I decided to share the strategies that I found helpful to succeed as a premedical and medical student," says Smith, now a fourth-year student at Mayo Clinic Alix School of Medicine . "My hope was that students who resonated with me would be motivated to pursue medicine as a career and have the tools necessary to succeed."

His YouTube channel, Evolving Medic, provides motivation for students pursuing careers in medicine, with strategies and other productivity tips they can use to excel inside and outside their academic responsibilities. (He chooses and describes those that are evidence-based and that he himself has used.) The need hits home: Evolving Medic, with more than 150 videos, has more than 36,000 subscribers. The channel has attracted partnerships with various healthcare-related companies, including a scrubs company and various education-based resources.

"Multiple prospective students to Mayo Clinic Alix School of Medicine have indicated that JR's videos were inspiring to them as they considered pursuing medicine as a career and as they navigated applying to medical school," says Megha Tollefson, M.D. , associate dean of admissions. "He's absolutely had a positive impact on students nationwide."

Smith will continue his training as a resident in orthopedic surgery at Mayo Clinic School of Graduate Medical Education. He intends to continue posting advice for future doctors. "As I progress throughout my career, I'm sure my audience will grow to include physicians as well," he says. "My desire is to share the guidance, resources and knowledge that may be limited for some with the hopes of creating a more equitable environment for all students to succeed."

Mentors make the difference

For Nihal Satyadev, M.D., a first-year neurology resident in Mayo Clinic School of Graduate Medical Education , a passion project focused on Alzheimer's disease made him realize the scope of the problem — and also solidified his career goals to address it.

As a college student and an aspiring clinician, he learned about the ways in which Alzheimer's disease is becoming a public health crisis. Along with classmates, he began an undergraduate club for students interested the topic. "What began as a few friends meeting at my apartment grew into one of the largest student groups on campus and ultimately the leading national youth Alzheimer's nonprofit," he says.

The project led him to reach out to Alzheimer's experts at Mayo Clinic, including Ronald Petersen, M.D., Ph.D. , who became mentors. "Early in the journey," Dr. Satyadev says, "I met with members of Dr. Petersen's team, including [research operations program manager] Angela Lunde at Mayo Clinic in Rochester, who were instrumental in helping me understand the intricacies of population level research and community interventions for dementia."

The initiatives of Youth Movement Against Alzheimer's aim to involve young people in addressing the public health crisis, for instance, by providing companionship to patients and giving time off to family caregivers. Dr. Satyadev was involved for eight years as the group continued to grow, and stepped back as it took on fulltime staff under the management of Hilarity for Charity, the nonprofit started by Lauren and Seth Rogen.

For Dr. Satyadev, the passion project was just a beginning. The connections he has made at Mayo, in particular with neurologist and dementia specialist Gregg Day, M.D. , helped solidify his commitment to becoming a neurologist who specializes in neurodegenerative diseases. Now conducting research projects with Dr. Day during his spare hours, Dr. Satyadev is aiming to develop new strategies to diagnose and treat Alzheimer's disease and related dementias.

"Working on the nonprofit helped me realize addressing this national and global challenge requires a lifetime commitment," he says.

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Ethical Issues in Public Health *

The field of public health includes a wide scope of activities and professional disciplines, ranging from sanitation, health protection, epidemiology, environmental health, financing, health promotion, including supervision, or the provision of clinical care. Each of these disciplines works in systems that face ethical dilemmas, making it important that public health workers have motivation to understand and practice within the ethical guidelines of their profession, thus making ethics an important component of training and practice. The dangers of ethical lapses are overwhelmingly apparent in the case of the Eugenics movement of the early 20 th century which metamorphosed from forced sterilizations in many liberal democratic countries into mass murder of physically and mentally handicapped children and adults in Nazi Germany. Between 1939 and 1941, 180 thousand psychiatric patients along with an equivalent number of handicapped children and adults were killed in an organized extermination program in Germany by lethal gassing. This method was then applied to the industrialized murder or Holocaust of six million Jews and millions of other “untermenschen” (sub human) in the greatest genocide in human history. Shortly after World War II ended the Nuremberg Trials of Nazi war criminals were conducted including medical doctors, and some were executed for crimes against humanity. This was followed by the 1948 United Nations Declaration on Human Rights and by the World Medical Association’s Helsinki Declaration. Both are widely accepted as cornerstone documents—the latter specifically governing ethical standards related to human experimentation—and are revised regularly since being issued in 1964. But genocide has not disappeared, nor has unscrupulous experimentation such as the Tuskegee experiment on black Americans infected with syphilis and left untreated even after the availability of a cure, penicillin. Ethical standards are now required by “Helsinki Committees”—ethical review boards—in most medical facilities worldwide. Ethical frameworks have evolved in part due to bitter experience of ethical failures later recognized and affecting public health standards of practice. Future generations of public health leaders and staff will face many ethical issues such as mandatory immunization of health workers and school children, and assisted death of terminally ill patients.

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Nuremberg Trial of Nazi war criminals, 1945–46. Available at: https://fcit.usf.edu/holocaust/resource/gallery/N1945.htm .

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Entrance to the infamous Auschwitz-Birkenau death camp where 6,000 people were put to death in gas chambers daily by the Nazi regime in World War II.

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Hungarian Jews arriving at Auschwitz near end of WWII for immediate gassing/extermination.

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Tuskegee Syphilis Study Participants. Courtesy: National Archives Catalogue, Tuskegee Syphilis Study Administrative Records, 1929–72 .

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Eleanor Roosevelt (1884–1962) former First Lady of the US, leading human rights diplomat reading the Universal Declaration of Human Rights, United Nations November 1949, United Nations, Lake Success, New York. Photo # 117539, United Nations Photo Library at http://www.unmultimedia.org/photo/ .

The Universal Declaration of Human Rights (UDHR) is a milestone document in the history of human rights. Proclaimed by the United Nations General Assembly in 1948 it provides a “Magna Carta” as a common standard for all peoples and all nations. Arising from the horrors of genocide and mass civilian casualties of World War II, the Declaration of Human Rights sets out, for the first time, fundamental human rights to be universally protected. It also provides a context for the complex topic of ethics in public health.

Ethics is a branch of philosophy that deals with the distinction between right and wrong—with the moral consequences of human actions. The ethical principles that arise in epidemiologic practice and research include:

• Informed consent
• Confidentiality
• Respect for human rights
• Scientific integrity

The Centers for Disease Control (CDC) in the US defines public health ethics: “ As a field of study, public health ethics seeks to understand and clarify principles and values which guide public health actions. Principles and values provide a framework for decision making and a means of justifying decisions. Because public health actions are often undertaken by governments and are directed at the population level, the principles and values which guide public health can differ from those which guide actions in biology and clinical medicine (bioethics and medical ethics) which are more patient or individual-centered .

As a field of practice, public health ethics is the application of relevant principles and values to public health decision-making. Public health ethics inquiry carries out three core functions ,

1. identifying and clarifying the ethical dilemma posed
2. analyzing it in terms of alternative courses of action and their consequences
3. resolving the dilemma by deciding which course of action best incorporates and balances the guiding principles and values (CDC) .”

Ethics in health is based on the fundamental values and concepts of a society. Medical ethics of the Hippocratic Oath hold the first obligation of a physician is to do no harm. The principle that saving a life is valued above all other religious considerations is of Biblical origins (i.e., Sanctity of Life or Pikuah Nefesh ), where the saving of a life is equivalent to saving the world. This implies that all measures available are to be used, irrespective of the condition of the patient or the cost. But if sickness and death are seen as acts of God, possibly as punishment for sin, then prevention and treatment may be considered to be interfering with the Divine will, and ethical obligation may be limited to relief of suffering. Humanism balances these two ethical imperatives: saving of life and relief of suffering. Materialism may see health care as primarily a function to preserve health for societal well-being and economic prosperity.

The role of society in protecting the health of the population evolved during the latter 19 th century with the sanitation movement and the gradual development of safe water supply, safe management of sewage and waste, and food safety with pasteurization, improving living conditions as well as medical care and the widespread implementation of national health insurance. Countries in Europe and the Americas began to recognize public health as societal obligations at municipal, state and national levels as part of fundamental values and concepts of a society. The astonishing success of public health over the past century increased life expectancy in high-income countries by some 30 years, mostly through improved sanitation, nutrition, living conditions and disease control measures, as well as societal and medical advances making care available to all. In the 1970s, the Lalonde concept emerged that individual behavior was one of the key health determinants, along with human biology, environment and medical care (see Chapter 21). This placed much of the responsibility for illness and its prevention on individual behavior, but at the same time fostered the development of health promotion as an essential component of public health theory and practice. All these points of view are involved in the ethical issues of the New Public Health (see Box 13.1 ).

Values and Ethical Principles of Public Health

1. Nonmalfeasance : Hippocratic Oath—do no harm.
2. Sanctity of human life : Biblical edict—saving a life comes before all other religious acts.
3. Universal Declaration of Human Rights : All humans deserve protection of life, health and well-being.
4. Individual human rights : Liberty, privacy, protection from harm.
5. Solidarity : Sharing the burden of promoting and maintaining health.
6. Beneficence : Reduce harm and burdens of disease and suffering.
7. Proportionality : Restriction on civil liberties must be legal, legitimate, necessary, and use the least restrictive means available.
8. Reciprocity : All have a right to just treatment but share responsibility to ensure justice especially for those facing heavy social and health burdens.
9. Transparency : Honest and truthfulness in the manner and context in which decisions are made must be clear and accountable.
10. Precautionary : Duty to take preventive action to avoid harm even before scientific certainty has been established.
11. Responsibility to Act : Public health officials and policy-makers have a duty to act and implement preventive health measures demonstrated to be effective, safe, and beneficial to population health. Failure to enforce public health regulations with resulting disease or deaths may constitute negligence on the part of responsible officials with civil or even criminal penalties.
12. Equity : Reduce gender, ethnic, social, economic, geographic inequities.
13. Cost and benefits : Economic analysis and consideration of priorities.
14. Stewardship : Responsibility of governance to act in a trustworthy and ethical manner.
15. Trust : Cooperation between the many public and non governmental stakeholders in health.
16. Evidence based : Decisions should be evidence-based, and revised, considering new evidence.
17. Responsive to needs : Address challenges as they may be anticipated and occur with close monitoring of health status.

Resources for health care are limited even in high-income countries, so that priority setting and judicious allocation of resources is always an issue. Money spent on new technology with only marginal medical advantages is often at the expense of well-tried and proven lower-cost techniques to prevent or treat disease. The potential benefits gained by the patient from more interventions are sometimes very limited in terms of length- or quality of life. These are difficult issues when the commitment to do all to preserve the life of the patient conflicts with the patient’s concept of quality of life and his or her right to decline, or terminate heroic measures of intervention. Terminally ill patients may endure suffering during radical treatment, which may prolong life by only hours or days, clashing with the physician’s ethical obligation to do no harm to the patient. The ethical value of sustaining the life of a suffering, terminally ill patient is a growing medical dilemma. The issue is even more complex when economic values are part of the equation. There is a potential conflict between the economic issues, the role of the physician in preserving life, the physician’s obligation to do no harm, the felt needs of the patient and his or her family, and the needs of the community. The right of patients to seek euthanasia or assisted suicide in end-of-life situations is increasingly recognized and practiced in some jurisdictions.

The state represents organized society and has, among its responsibilities, a duty to promote healthful conditions and to provide access to both medical care and public health services. The dissonance between individual rights and community needs is a continuous issue in public health. Application of accepted public health measures for the benefit of people in society may require applying an intervention to everyone in a community or a nation. A democratic society ruled by law and legal protection of human rights may justifiably need to place limits on individual liberties to achieve the goal of reducing disease or injury in the population. Raising taxes and other restrictions on alcohol and tobacco products, laws on mandatory speed limits, driving regulations including seat belt usage, car seats for children and mandatory immunization for school attendance are examples of public health restrictive interventions which place limits on individuals but protect those individuals, their neighbors and the community-at-large from harm.

Some forms of mass medication are accepted methods of public health practice to reduce the risk of disease in the population. Chlorination of community water supplies is a well-established, effective, and safe intervention to protect the public health. Fluoridation of drinking water to prevent tooth decay in children means that other persons are also drinking the same fluoridated water, which is of less direct benefit to them. Mandatory pasteurization of milk is an important standard for public health. Fortification of basic foods with vitamins and minerals is also a cost-effective community health measure and banning of trans fats to reduce heart disease, are all topics with advocates and opponents. The addition of folic acid to food as the most effective way to prevent neural tube defects (NTDs) in newborns is an intervention mandated by the US Food and Drug Administration (USFDA) and in over 80 other countries since 1998 (see Chapter 20). Use of mass immunization is essential for infectious disease control and mass medication is successful for control of “Neglected Tropical Diseases”.

Individual and Community Health

Confidentiality to assure the right of the individual to privacy involves ethical issues in the use of health information systems. Records of birth, death, reportable communicable and selected noncommunicable conditions (such as cancers, birth defects, neurological conditions), and hospitalization data—e.g. admissions by cause, length of stay—are essential data bases providing basic tools of epidemiology and health management. The use of detailed individual data, such as in mandatory reporting of infectious diseases and birth defects, e.g., is needed for case-finding and follow-up activities which is vital for population health monitoring and good epidemiologic management of disease outbreaks and routine monitoring functions of public health. However, caution is needed in data use to avoid individual identification to prejudice privacy, or that could be used punitively, such as in denial of access to health insurance or employment for smokers, alcoholics, or AIDS patients on the grounds that these are known causes of health damage that may be attributed to self-inflicted risk factors or preexisting conditions. This may become even more important if preexisting conditions or genetic susceptibility come to be used as determining factors to access health insurance or employment. Reporting is mandatory for physical for sexual abuse and criminally linked injuries as a measure essential for protection of vulnerable groups such as children, women, elderly, ethnic minority groups, or the general public from serious harm from bullying, abuse, violence or incitement to genocide.

Protection of the individual’s rights to privacy, and freedom from arbitrary and harmful medical procedures or experiments may clash with the rights of the community to protect itself against harmful health issues. This conflict comes into much of what is done in public health practice, which has both an enforcement basis in law and practice as well as a humanitarian and protective aspect based on education, persuasion, and incentives. Society permits, indeed requires its governments to act for the common good, but sets limits that are protected by the constitution, laws, courts and administrative appeal mechanisms.

Democratic societies have the right and obligation to legislate work, including mine and construction safety regulations, and traffic safety including speed permitted, wearing seat belts, use of car seats for small children and non-use of cellphones during driving. Offenders may be punished by significant fines and be subjected to strict educational efforts to persuade them to comply. Similarly, the community must ensure sanitary conditions to prevent hazards or nuisances for neighbors. Society must act to protect the environment against the unlawful poisoning of the atmosphere, water supply, or earth. Enforcement is a legitimate and necessary activity of the public health network to protect the community from harm. Table 13.1 shows topics where individual rights and responsibilities predominate, and a second set of rights that are the prerogative of the community to protect its citizens against public health hazards. Sometimes the issues overlap with political, advocacy, or legal action so that court decisions or new laws are needed to adjudicate precedents for the future.

Individual and Community Rights and Responsibility in Health: Ethical/Legal Issues

The 20 th century was replete with mass murders, executions, and genocide with nationalistic, ideological, and racist motives perpetrated by fascist, Stalinist, and radical xenophobic political movements when gaining governmental power by election or by revolution, in some cases using then-common public health terminology and concepts. In the 21 st century, radical jihadist terrorist groups and governments such as in Syria not only conduct mass killing of civilians, but also target ethnic minorities and religious groups with active genocide including deliberate use of chemical weapons, mass starvation, rape, murder and enslavement against civilians with bombings of civilians, medical workers, and hospital facilities.

Public health policy is guided by two distinct but interactive paradigms; the biotechnological disease and the social-ecological health paradigms. In the 19 th century these were the Germ Theory and the Miasma Theories, long at loggerheads, yet both produced enormous gains in public health. The biomedical paradigm addresses alleviation of disease risk or manifest diseases, with immunizations, screening and risk-factor reduction. The social health paradigm addresses the improvement of the physical and socioeconomic environment and healthy living, with the objectives of reducing disease and inequities in health between socioeconomic and regional population health disparities.

During the early part of the twentieth century, a segment of the social hygiene movement adopted ideas of racial improvement by compulsory termination of pregnancies and sterilization of the mentally ill, retarded, and other “undesirable persons.” By 1935, when the Nazi sterilization laws were passed, about 20 states in America already had sterilization laws in effect with concurrence of the US Supreme Court. American eugenics policies were praised by Hitler, and these ideas were adopted in Nazi Germany leading to execution of half a million “undesirables” under the eugenics concept, and were adapted for mass extermination of Jews, Gypsies, homosexuals, and others during the Holocaust.

The policies of eugenics were widely promoted by medical professionals in Sweden, the United States and Canada. This led to adoption of policies and programs to force legally sanctioned sterilization of mentally handicapped or mentally ill patients. This practice was attractive to Nazi policy before and after its rise to power in 1933, with wide support among the medical and psychiatric professions. Between 1939 and 1941, 180,000 psychiatric and physically handicapped patients were killed in Germany with the active participation by medical doctors, psychiatrists, nurses, and ancillary personnel under direct guidance of the so called T4 program, named after the address of Hitler’s headquarters from where it was directed.

This corruption of public health distorted a socially oriented concept of public health to a racially oriented policy with horrendous actions of mass murder in the name of racial purity as a public health policy. This policy was supported and implemented by leading psychiatrists in a number of western liberal democratic countries providing a precedent adopted and expanded in monstrous manners in Nazi Germany with nearly total support and participation of a highly Nazified medical profession. The T4 program utilized starvation and gassing to kill helpless people and these methods became the direct antecedent to the mass murder of Jews, Gypsies, homosexuals, Soviet prisoners, and other “undesirables.”

A noted Cambridge professor of modern history, Sir Richard Evans wrote:

“At the heart of German history in the war years lies the mass murder of millions of Jews in what the Nazis called “the final solution to the Jewish question in Europe”. This book provides a full narrative of the development and implementation of this policy of genocide, while also setting it in the broader context of Nazi racial policies toward the Slavs, and toward Gypsies, homosexuals, petty criminals and ‘asocials’.” (preface xiv). Evans continues: “For many years, and not merely since 1933, the medical profession, particularly in the field of psychiatry, had been convinced that it was legitimate to identify a minority of handicapped as ‘a life unworthy of life’, and that it was necessary to remove them from the chain of heredity if all the many measures to improve the health of the German race under the Third Reich were not to be frustrated. Virtually the entire medical profession has been actively involved in the sterilization programme, and from here it was but a short step in the minds of many to involuntary euthanasia” (page 82). “By the time the main killing programme had ended, in August 1941, a large part of the medical and caring professions had been brought in to operate the machinery of murder.… the circle of those involved had grown inexorably wider, until general practitioners, psychiatrists, social workers, asylum staff, orderlies, nurses and managers, drivers and many others had become involved, through a mixture of bureaucratic routine, peer pressure, propaganda and inducements and rewards.… Having proved itself in this context, it was ready to be applied in others, on a far larger scale.” (p. 101). The T4 euthanasia program was administered directly from Hitler’s main office “The euthenasia program was preceded by mass sterilization of nearly 400,000 ‘unfit’ Germans before the war broke out” (p. 105). (Evans RJ. The Third Reich at War. New York: Penguin Press, 2006).

The human and national cost of genocide lasts for generations. The hatred and fear may wane, but the trauma goes deep. It lasts with the victims and their descendants, but also with the perpetrating country and its culture. The Nazi Holocaust has downstream effects in public health in German-speaking countries over 65 years since the events took place. The eugenic theory assumption was that a healthy population must be “free” of “racially contaminated” individuals and inferior groups which led to a public policy to eliminate racially “unclean” members through forced sterilization and murder opening the door to a euthanasia program of mass execution of mentally and physically handicapped Germans and others in psychiatric facilities, which provided a working model for the industrialized murder of the Holocaust. This was in direct conflict to a 200-year tradition of Germany’s socially-oriented public health grounded in the political philosophy of human rights and social justice, many of whose advocates were mostly exiled or murdered. Many of the Nazi oriented academic medical leaders during World War II remained in key positions in the German public sector for many following decades.

The Nuremberg Doctors Trial in 1946–47 convicted many leading Nazi physicians of crimes against humanity with severe punishments including hanging or long prison terms. However, many in the medical profession aligned with these horrors remained in leading positions in the medical community—one even being elected to head the World Medical Association then discussing the Helsinki Declaration of Ethics in Biomedical Research before being forced to resign. The Nuremberg Trials and the subsequent Helsinki Declaration laid the fundamentals of biomedical ethics with regulations and requirements of ethical procedures and the Institutional Research Board, often referred to as Helsinki Committees. These were established by individual research centers, universities, hospitals, and other health care facilities to supervise and approve (or refuse) applications seeking funding, conducting, and publishing research involving human subjects.

The reappearance of genocide in the late twentieth century in the Balkans and Rwanda and in the twenty-first century in Darfur with over 300,000 deaths and 2.5 million displaced persons highlight this as a public health concern and its prevention as a public health and international political responsibility. Incitement to genocide is now considered a crime against humanity and was the basis for trials and convictions of leaders of the Rwandan Tutsi tribe, as well as inciters to ethnic violence and the political leaders and perpetrators of mass murders in the former Yugoslav republic. The threat and practice of genocide is still present, whether it is the murderous raids of Sudanese Janjaweed militias in Darfur and South Sudan, or the threats of genocide by Iran and associated terrorist organizations against Israel and Jews in general, the killing of Christians in northern Nigeria, Muslims in Myanmar and the genocidal civil war in Syria. Incitement to genocide is now accepted as part of international discourse, including the United Nations, which acted to accommodate the Rwanda massacres in 2003.

The risk of “silent” genocide is present in the 21 st century with forced migration, limiting access rights of refugees to host countries, use of chemical weapons against civilian targets, use of starvation, mass rape and abuse of civilian displaced persons, and persecution including mass murder, expulsion, and slavery of minority ethnic, religious and refugee populations.

The UNICEF report of 2017 states: “ 2016 was one of the most dangerous years to be a child in recent memory. Millions of children were threatened and displaced by crises around the world. Millions more faced poverty, deprivation, violence, exploitation and discrimination. ” There are 66 million displaced persons in the world in 2017 who are refugees from war, endemic violence, terror, sexual violence and slavery, ethnic violence, chemical warfare, bombing civilians and medical facilities, hazardous journeys to “safety,” and starvation as a tool of warfare, all forms of genocide. All of this in the 21 st century when “Never Again: was the slogan following the Holocaust and other horrors of the 20 th century.

Genocide represents the most extreme assault on human rights and protection for life. In the 20 th century, an estimated 200 million have perished from genocide. An outline of genocides of the past 100 years is seen in Box 13.2 . The Turkish genocide of Armenians in 1917 was followed by horrific genocides carried out under the flag of communism in Soviet USSR in the 1920s, in the Peoples’ Republic of China under Chairman Mao in the 1950s and the Khmer Rouge in Cambodia in the 1980s, nationalism in the former Yugoslav republics in the 1990s and ethnic hatred in Darfur in the early years of the 21 st century, and in civil war in Syria in the second decade of the 21 st century. Totalitarian dictatorships, past war and defeat, ideologies of exclusiveness, ethnic purity and religious fundamentalism increase risks for genocide. Perpetrators use dehumanizing, demonizing and delegitimizing hate speech to desensitize or intimidate bystanders and to incite, mobilize, order and instruct followers to carry out mass murder.

Eugenics and Genocide: “the Slippery Slope”

Eugenics was a movement within the “Social Hygiene” concept of the early part of the 20 th century. It was widely promoted to improve the population by reducing births among mentally ill and handicapped people. Legislation in some states in the US was upheld in decisions of the Supreme Court.

In 1942, the American Journal of Psychiatry published three articles, one arguing that “feebleminded” people should be killed (i.e., euthanasia). A rebuttal argued against euthanasia. An unsigned editorial position was that “euthanasia” would be appropriate in some cases, and that parents’ opposition to this procedure should be the subject of psychiatric concern. The arguments referred to the context of eugenics and the murder of mental patients in Germany. The editorial pointed out that those genetic theories in psychiatry could be a precursor for future similar proposals. Forced sterilization was also practiced in Canada and Sweden.

This idea was promoted by Hitler in Mein Kampf and adopted by the Nazi party, which was legally elected to office in 1933. Organized massacres of mentally-ill and handicapped children and adults led to practices of various modes of killing, including starvation and gas chambers. These methods were then applied in concentration camps and the Holocaust murder of six million Jews and millions of others.

Genocide represents the most extreme assault on the respect for life. During the 20 th century, an estimated 200 million have died during genocide. Totalitarian dictatorships, past wars and defeat, ideologies of exclusiveness, ethnic purity, and religious fundamentalism increase risks for genocide. Perpetrators use dehumanizing, demonizing, delegitimizing incitement by hate speech and propaganda to desensitize or intimidate bystanders and to promote, organize, order, and instruct followers ready to carry out mass murder. Consider the following list:

• 1915–17: Armenian genocide by Ottoman Turkish Empire—1.2 million killed.
• 1920–40s: Eugenics movement—United States, Sweden, Canada.
• 1920s: Mass executions, deportations, starvation as policy in Soviet Union Stalinist regimes killed millions.
• 1930–40s: Mass sterilization of “defectives” in the US and Sweden.
• 1930–40s: Mass murder of “defectives” in Nazi Germany (750,000).
• 1940s: Quarantining as pretext for ghettos by Nazis.
• 1940s: Concentration camps, human experimentation.
• 1940s: Holocaust; six million Jews and genocide in Nazi occupied Poland and the Soviet Union.
• 1947: Nuremberg Trials; convictions and capital punishment for crimes against humanity, genocide and criminal experimentation on humans by Nazi leaders and medical doctors.
• 1950s: Mass starvation in Maoist China—estimated deaths of 21 million people.
• 1948: Convention on the Prevention and Punishment of the Crime of Genocide.
• 1975–79: Cambodian political genocide of 1.7 million; genocide of Hmong in Laos.
• 1988: Iraqi genocide of Kurds in town of Halabja by poison gas.
• 1988: Brazil genocide of Tikuna people.
• 1992–95: Serbian rape, starvation and massacres in Srebrenica in Bosnia, Croatia and Herzegovina.
• 1994: Rwandan genocide of Tutsi tribe with 800,000 killed over a 100-day period from April to July.
• 2003–12: Sudanese genocide in Darfur (400,000 plus).
• 2011–17: Sudanese genocide of Nuba people.
• 2012–17 Iran incitement to genocide of Israel.
• 2012–17: Syria: Civil war; mass civilian deaths by bombardment and gas, displacement of millions; genocide of Yazidis and Christians.
• 2012–17: Democratic Republic of Congo massacres of Kivu minority; mass violence and refugee flow from South Sudan.
• 2017 Expulsion and mass violence against over 600,000 Rohingya Muslim population of Myanmar.

The UN Convention on Prevention and Punishment of the Crime of Genocide (UNPPCG) of 1948 defines acts committed with intent to destroy, in whole or in part, members of a national, ethnical, racial or religious group as crimes against humanity. The UNPPCG specifies that incitement to genocide is itself a crime against humanity. Legal action should focus on state-sanctioned incitement as a recognized early warning sign. The UNPPCG convention defines genocidal acts including the following as punishable under international law:

• Genocide.
• Conspiracy to commit genocide.
• Direct and public incitement to commit genocide.
• Attempt to commit genocide.
• Complicity in genocide.

Genocide prevention requires international surveillance networks for monitoring and reporting incitement and hate speech in media, textbooks, places of worship, and the internet. Surveillance should monitor and identify the sources, and map their distribution and spread. Dehumanization, demonization, delegitimization, disinformation, and denial are danger signs of potential genocidal actions. Genocide results from human choice and bystander indifference. One lesson of the Holocaust and subsequent genocides is that silence by nations and international organizations constitutes complicity. The public health community has a responsibility to speak out publicly on genocidal threats and its early warning signs (See Box 13.1 ).

Human Experimentation

Human experimentation has been a subject of great concern since the Nazi and Imperial Japanese armed forces’ horrific experiments on prisoners and concentration camp victims during World War II. The Nuremberg trials set forth ten principles of professional responsibility to comply with internationally acceptable medical behavior in regard to research on humans (see Table 13.2 ).

Ethical Issues of Medical Research Derived from the Nuremberg Trials, the Universal Declaration of Human Rights and Declaration of Helsinki

Note: Summarized from the Nuremberg Trials (1948) and World Medical Association, Declaration of Helsinki.

The Helsinki Declaration was first adopted by the World Medical Assembly in 1964, and amended in 1975, 1983, 1989, 1996, and 2013. It delineates standards of medical experimentation and requires informed consent from subjects subjecting themselves to medical research. These standards have become the international norm for experiments, with national-, state-, and hospital-Helsinki committees regulating research proposals within their jurisdiction. Funding agencies require standard approval by the appropriate Helsinki committee, sometimes called Institutional Review Boards (IRBs) or Ethical Review Boards (ERBs), before considering any proposal, with informed consent on any research project. The process recognizes that medical progress is based on research that must include studies involving human subjects, but medical research is subject to ethical standards that promote and ensure respect for human subjects and protect their health and rights. The key issues examined include:

• Research objectives should outweigh the risks and burdens to the research subjects.
• Research should conform to generally accepted scientific principles and literature.
• Participants are volunteers.
• Informed consent must be obtained including warning of potential risks.
• Risks are minimized and monitored.
• Respect for privacy and confidentiality.
• Respect for human rights.
• Scientific integrity.
• Social solidarity and paternalism.
• Fairness and equity.
• If the results are definitively positive, the research should be stopped.

The Tuskegee experiment (see Box 13.3 ) conducted in Alabama from 1932 to 1972 by the US Public Health Service (USPHS) was a grave and tragic violation of medical ethics. It was initiated in the context of the 1930s and consistent with widespread and institutionalized racism, detached from humanist values and historical medical ethics of “first, do no harm.” The Tuskegee experiment, and a following similar study conducted by the USPHS in conjunction with the Ministry of Health in Guatemala, are remembered as important ethical transgressions which have had repercussions until the present time resulting in suspicion of public health endeavors, particularly among the African-American community in the US, even after a public apology in 1997 by then president Bill Clinton.

The Tuskegee Experiment

The Tuskegee experiment was carried out by the US Public Health Service between 1932 and 1972. It was meant to follow the natural course of syphilis in 399 infected African-American men in Alabama and 201 uninfected men. The men were not told that they were being used as research subjects. The experiment had been intended to show the need for additional services for those infected with syphilis. However, when penicillin became available in 1942, the researchers did not inform or offer the men treatment, even those who were eligible when drafted into the army in 1942. The experiment was stopped in 1972 as “ethically unjustified” when the media exposed it to public scrutiny.

The case is considered unethical research practice because, in the time it was conducted, it did not provide the patients with information on the research nor on the availability of curative care when it became available. The patients’ well-being was put aside in the interest of a descriptive study.

A similar experiment was conducted by the US Public Health Service in full cooperation with the Guatemala Ministry of Health during 1946–1948 in which soldiers, prisoners, and others were deliberately exposed to prostitutes known to be infected with syphilis. This experiment was terminated when it was revealed in the US media by a historian.

In 1997, President Bill Clinton apologized to the survivors and families of the men involved in the experiment on behalf of the US government. The Tuskegee experiment is the source of widespread lingering suspicion of public health in the African-American community to the present time.

Ethics in Public Health Research

The line between practice and research is not always easy to define in public health, which has surveillance of population health as one of its major tasks. This surveillance is mostly anonymous, but relies on individually identifiable data needed for reportable and infectious disease control as well as for causes of death, birth defects, mass screening programs, and other special disease registries. It may also be necessary to monitor the effects of chronic disease, for example, to ascertain repeat hospitalizations of patients with congestive heart failure to assess the long-term effects of treatment, and the effects strengthening ambulatory and outreach services to sustain chronic patients at a safe and functional level in their own homes.

Preventive care practices—e.g., sanitation, healthy and safe food and diets, health promotion, immunizations, prenatal care, newborn screening, Pap smears, mammography, and colonoscopies—as well as access to medical care and hospital utilization, are all part of public health. Monitoring and impact assessment of preventive programs may require special surveys, such as those conducted by the US National Health and Nutrition Studies (NHANES) and are important to assess health and nutritional status as well as other measures of health status and risk factors such as smoking and exercise. Every effort in public health research must be made to preserve anonymity and privacy for the individual, but in some cases such as reporting of contagious diseases or birth defects, case contact is crucial. This can entail identifying people who attended an event or were on an airplane where an infected person may have been — such as with measles or antibiotic resistant tuberculosis — so as to take appropriate preventive measures.

The general distinction between research and practice has to do with the intent of the activity. Clinical research uses experimental methods to establish the efficacy and safety of new or unproven interventions; many drugs and procedures in common use have never been subjected to randomized controlled trials. In practice, many methods are devised that are held to be effective and safe by expert opinion and documented as such. Researchers comparing HIV or hepatitis B transmission rates among intravenous drug users not using needle exchange programs would be doing unethical research, according to accepted current standards, by giving safe needles to the experimental group and withholding them from the control group. The scientific justification of an experiment must be made explicit but would not likely be approved by an Ethical Review Board (Helsinki Committee). In some cases of new therapy for life threatening conditions, the FDA will “fast track” what are called “orphan drugs” urgently needed as happened with the NIH recommendation for antiretroviral (ART) drugs for HIV/AIDS. This turned out to be a major success for treatment and prevention of HIV (Faucci, 2014). Clinical equivalence is a necessary condition of all clinical and public health research and provision of standard of care treatment to control groups is a minimal requirement for most research ethics boards. Determination of the standard, and whether it should be place, time, and community specific, is an area of ongoing controversy.

A 1996 US Public Health Service study supported by the US National Institutes of Health (NIH) and WHO compared a short course of zidovudine (AZT) to a placebo given late in pregnancy to HIV-positive women in Thailand, measuring the rate of HIV infection among the newborns. The experiment was terminated when a protest editorial appeared in a prominent medical journal. This study confirmed previous findings that AZT given during late pregnancy and labor reduced maternal-fetal HIV transmission by half. The findings indicate that AZT should be used in developing countries, and the manufacturers agreed to make it available at reduced costs. The result has been a major success with more recent medications to reduce maternal–fetal transmission of HIV in many places in Africa with important financial and professional support from the Global Alliance for Vaccine Initiatives (GAVI), international donors, and a slowing of the spread of HIV- and AIDS-related deaths.

An outstanding case of breach of ethics in public health research occurred with the “Wakefield Effect” as described in Box 13.4 . The importance of responsible medical journalism to keep a watchful eye on the possibilities of misleading scientific publications is of great importance for the ethical and legal aspects of public health.

The Wakefield Effect

In 1998, one of the top medical journals in the world, Lancet , published an article by a number of well-known researchers headed by Dr. Andrew Wakefield. The article reported on 12 cases of autistic children and allegedly showed a connection to immunization with MMR vaccine (measles-mumps-rubella).

The immediate effect of this “revelation” was widespread alarm in the United Kingdom and abroad concerning MMR vaccine and a drop in immunization coverage with measles-containing vaccines in the United Kingdom and elsewhere. This was mainly triggered by mothers refusing to have their child vaccinated with the “risk of autism”. As a result, measles epidemics occurred in the United Kingdom and in many other countries with the disease again becoming endemic in many parts of Europe and spreading to North and South America by travelers and tourists.

After a long series of investigative journalism in the British press, the article came under scientific scrutiny and the withdrawal of many of the coauthors, but consistent insistence by the lead author of its authenticity. Coauthors admitted to having been credulous and insufficiently vigilant in agreeing to be associated with the paper. British medical authorities later found Dr. Wakefield guilty of medical fraud and the UK General Medical Council withdrew his license to practice medicine. In 2000, 12 years after the original publication, Lancet formally withdrew the article. This fraudulent scientific publication caused a serious loss of the credibility of immunization in general, and especially regarding MMR vaccine, one of the greatest life savers of public health.

The return of measles in Europe to endemicity with frequent international transmission, fostered loss of confidence by mothers in immunization. Measles-containing vaccines were particularly affected due to the publicity given to the Wakefield case and issues of scientific integrity. Fraud and conflict of interests were proven in this case. The journal editors failed to ensure the scientific integrity of the lead author and coauthors, and were negligent in failure of the journal to retract fraudulent and disproven publications in real time, instead of waiting 12 years after publication.

In other public health issues, single publications of findings of small sample and poorly assessed studies published in haste without adequate critical review occur frequently. In electronic media, the problem of disinformation provokes great anxiety and rejection of well-established successful public health interventions such as fluoridation, and folic acid fortification of flour, with unsubstantiated and disproven claims that they may cause cancer, asthma, and other ill effects.

The interface between ethics, law, and science in public health requires continuous sensitivity to the downstream effects of reducing public trust and reduced parental compliance with immunization of their children and putting other children at risk.

Current Relevance

A preeminent ethical issue in public health is that of assuring universal access to services, and/or the provision of services according to need. While all industrialized countries except the United States have universal health care insurance or national health service evolving since the 19 th century (see Chapter 8); the United States is still struggling with the issue in the 21 st century. The solidarity principle of societal shared responsibility for funding universal access to health care is based on equitable prepayment for health care for all by nationally regulated mechanisms through place of work or general revenues of government. A society may see universal access to health care as a positive value, and at the same time utilize incentives to promote or place limits on use of services or benefits to the individual such as hospital care, immunization, screening programs, prescription drugs and others. Some services may be arbitrarily excluded from health insurance, such as dental care, although this is to the detriment of children and a financial hardship for many. Strategies for program inclusion are often based on historical precedent rather than cost-effectiveness or evidence. While efforts are being made to include more children in the program, the Medicaid system in the US defines eligibility at income levels up to 133 percent of the poverty line, thus excluding a high percentage of the working poor. This is a topic of current and continuing political importance in electoral platforms in the US to address the challenge of the uninsured and poorly insured working poor population (i.e., Obamacare versus Trumpcare). Health is also a political issue in countries with universal health systems where funding may be inadequate or patient dissatisfaction common.

The HIV/AIDS epidemic which appeared suddenly in the early 1980s and became a global pandemic in 1990s raised a host of medical and public health ethical issues. Management of the epidemic was in some respects in conflict with the long-established role of public health of contacting and quarantining persons suffering from selected communicable diseases. It was not acceptable or feasible in modern society to require follow-up of case contacts or to isolate HIV carriers, at a time when there was no clinical cure with medications. However, this led to failure or delay of public health authorities, even in the late 1980s, to close public bathhouses in New York and other US cities where exposure to multiple same-sex partners promoted spread of a lethal disease, which could have been interpreted as negligence. During the 1980s, the politics of HIV/AIDS in the US centered on concerns in the community of men who have sex with men (MSM) that HIV testing could be used in a discriminatory manner. AIDS was initially addressed as a civil liberties issue and not as a public health problem. Screening, reporting, and case contact follow-up were seen as an invasion of privacy and counterproductive by increasing resistance to and avoidance of testing.

In these political circumstances, the educational approach was adopted as most feasible and acceptable. The AIDS epidemic and public anxiety about contracting AIDS through casual sexual contact reinforced the need for public education on safe sex. This has been raised as an ethical issue because such education may be construed as condoning teenage and extramarital relations. The issue of HIV screening of pregnant women in general or in high-risk groups took on a new significance with the findings that treatment of the pregnant woman reduces the risk of HIV infection of the newborn, and that breastfeeding may be contraindicated.

A similar issue arose anew in the past decade in the context of using the new human papillomavirus (HPV) vaccine for prevention of cancer of the cervix. Initially the vaccine was recommended for preteen girls to create protective antibodies to the virus before they became sexually active to prevent the possibility of sexually transmitted infection of the virus. Controversy arose over concern that this immunization of young girls might promote early onset of sexual activity. Gradually acceptance increased and other age groups of women were urged to take the vaccine. Boys were added to the recommended immunization target groups so as to reduce transmission of the virus, and to address male-to-male transmission via oral and anal sex. Inclusion of HPV vaccination requirement for school entry is under debate in the US, but parental refusals are increasing. CDC reports that HPV infects a large proportion of people in the US. Among adults aged 18–59 it was 45 percent in men and 40 percent in women. Nearly 10,000 women in the US are diagnosed with cervical cancer each year and 3,700 women die. Cancer of the cervix has been massively reduced by routine Pap smears for early case-finding and treatment. The advent of an effective HPV vaccine promises to lower cancer of cervix rates even further. The disease is much more common in low-income countries where screening and HPV immunization are still very low on the health priorities list, so that cervical cancer is the second leading cancer killer of women worldwide. A recent survey conducted by the American Academy of Pediatrics result indicated that nearly 90 percent of pediatricians reported that they experienced parental vaccine refusals in 2013 compared to 75 percent in 2006. The vaccines most likely to be refused, mainly due to misinformation, are HPV, influenza, measles, mumps, and rubella vaccines, all strongly recommended by public health and clinicians.

Choices in health policy are often between one “good” and another. Limitations in resources may make this issue even more difficult in the future, with aging populations, increasing population prevalence of physical disabilities, and rapid increases in technology and its associated costs. For example, the UK’s National Health Service at one point refused to provide dialysis to persons over age 65. When computed tomography (CT) was first introduced, Medicare in the US refused to insure this service as an untested medical technique. Due to a lack of facility resources such as incubators and poor prospects for the survivors, the Soviet health system considered newborns as living only if they weighed over 1,000 grams and survived more than seven days. Those under 1,000 grams who would be considered living by other international definitions, would be placed in a freezer to die. At the opposite extreme, many western medical centers use extreme and costly measures to prolong life in terminally ill patients, preserving life temporarily, but often with much suffering for the person and at great expense to the public system of financing health care.

In many countries, such as those in the former Soviet system, spending for hospital services, in some cases was grossly overemphasized and in excess of need, accompanied by lack of funds for community care such as adding new vaccines for the immunization program for children, although coverage rates were high. In the US, there was a lack of funds for immunization of poor children, but this has gradually improved over the past decade with changes in health insurance for the poor as well as by using food supplement programs to promote immunization.

Research Misconduct

The Office of Research Integrity of the US Department of Health and Human Services defines research misconduct as: “fabrication, falsification, or plagiarism in proposing, performing, or reviewing research, or in reporting research results:

• Fabrication is making up data or results and recording or reporting them.
• Falsification is manipulating research materials, equipment, or processes, or changing or omitting data or results such that the research is not accurately represented in the research record.
• Plagiarism is the appropriation of another person’s ideas, processes, results, or words without giving appropriate credit.
• Research misconduct does not include honest error or differences of opinion.”

The prevalence and publication of erroneous information and compromised research findings is an ongoing issue in the 21 st century, which can spread false information in the media such as the internet. This can have serious negative consequences for population health. Pseudoscience can feed populist movements with tragic consequences in public health.

Helsinki Research Ethics Committees (or Institutional Review Committees) are responsible to ensure that ethical principles are maintained in research proposals and publication of results of such research. These principles include informed consent, confidentiality, and scientific integrity. Publication in peer-reviewed journals is essential for establishing and advancing the evidence base for public health practice. Poor, or fraudulent science, can have a substantial adverse impact on public opinion both on health issues and on the priorities in the allocation of resources. It is essential that journal editors and reviewers adhere to high ethical and professional standards. They must be vigilant to avoid allowing poor professional standards of articles to be published or allowing non-professional factors or conflicts of interest to distort decision-making processes. Professional integrity and high scientific standards are vital to advance public health practice.

Ethics in Patient Care

Ethical issues between the individual patients and health care providers are important in health systems. A doctor is expected to use diligence, care, knowledge, skill, discretion, and caution in keeping with practice standards accepted at the time by responsible medical opinion, and to maintain the basic medical imperative to “do no harm” to the patient. Patients should have the right to free choice of provider and treatment, to observance of quality standards, access to high quality health services, to be informed of his or her condition, give informed consent, to confidentiality of personal and health information, and to physical privacy during care and diagnosis, to available alternatives for treatment, to be informed of the risks and benefits involved, and to complain and seek compensation for negligence. Ideally, patients have the right of access to high quality health services, to safety and freedom from harm caused by lack of resources, geographic inequality, poor functioning of health services, and from medical malpractice and errors. Patients’ rights include the right of access to innovative procedures, including diagnostic procedures, according to international standards and independent of economic or financial considerations. Patients may seek alternative medical opinions, but this right is not unlimited, as any insurance plan or health service may place restrictions on payment for further opinions and consultation without the agreement of a primary care provider, which is called “the gatekeeper” role.

Health insurance providers have responsibility beyond that of payment for health service and individual care by a physician, in institutions, or through services in the community or the home. The contract for service is becoming less between an individual physician and the patient, but increasingly among a health system provider group staff and a client. This places a new onus on the physician to ensure that patients receive the care they require. Conversely, the US provider often faces the dilemma of knowing that a patient may not access needed services because of a lack of adequate health insurance, and the terrible practice of exclusions due to “prior health conditions”.

Sanctity of Life Versus Euthanasia

The imperative to “save a life” is an important ethical and practical issue in health care. Principles of physician-assisted euthanasia were based on a legal process including psychiatric assessment. Physician-aided suicide of a patient is facilitated by providing the means or information—e.g., indication of a lethal medication dosage—provided by a physician who is aware of the patient’s intent. Both are based on the right of the patient to decide to die with dignity when their illness is terminal and the individual is suffering excessively. This is not a medical decision alone. It is also an agonizing issue for society to address.

The Nazi euthanasia program in Germany in the 1930s and its subsequent application as mass extermination in the Holocaust with grossly unethical human experimentation provided the direst of warnings to societies of what may follow when the principle of the sanctity of individual human life is breached. The issue, however, returned to the public agenda in the 1980s and 1990s as advances in medical science have allowed the prolongation of human life beyond hope of recovery.

Legislation in the Netherlands, Belgium, the US (“assisted suicide” in six US states, Washington DC, Oregon, Vermont, California, Colorado, and Montana as of April 2017), northern Australia and Canada legally sanctioned passive euthanasia (i.e., withdrawing medical assistance) with various safeguards in a variety of circumstances, such as long-term comas or late stages of terminal illnesses. The legislation in Canada, known as “dying with dignity”, is the federal regulatory framework with strict criteria for eligibility and procedures, provides for medical assistance in dying for those persons with a “grievous and irremediable medical condition; they have made a voluntary request for medical assistance in dying that, in particular, was not made as a result of external pressure; and they give informed consent to receive medical assistance in dying after having been informed of the means that are available to relieve their suffering.” The person must be eligible for government-funded health services and be over 18 years. Doctors, patients, relatives, and health care organizations need clear guidelines, orientation, procedures, legal protection, and limitations where failure to take the utmost steps to “save” the patient by intubation, resuscitation, or transplantation may cause legal jeopardy. Protection of the elderly or chronically ill from malicious application of this form of merciful death must ensure that it is truly the patients’ wish. This requires well defined procedures with legal, social, psychiatric and medical participation.

Even though a distinction can be drawn theoretically between permitting and facilitating death, in practice, doctors in intensive care units face such decisions regularly where the line is often blurred. Hospital doctors routinely take extreme measures to prolong the life of hopeless cases. Such decisions should not be considered for economic reasons alone, but in practice the costs of care of the terminally ill will be a driving force in debate of the issue. Living wills allow a patient to refuse heroic measures such as resuscitation, with “do not resuscitate” standing orders and assignment of power of attorney to family members to make such decisions. Family attitudes are important, but the social issue of redefining the right of a patient to opt for legal termination of life by medical means will be an increasingly important issue in the 21 st century.

The Imperative to Act in Public Health

As in other spheres of medicine and health, in public health the decision whether to intervene in an issue is based on identification and interpretation of the problem. A case must be made of importance even if a rare condition, establishing evidence of the potential of the intervention to improve the situation, to do no harm, and to convince the public and political leaders of the need for such intervention along with the resources to carry it out. This process requires patience and a longer time frame than many other fields in health.

Some interpretations of ethics in health consider that the only purpose for which power can be rightfully exercised over any member of a democratic community, without asking individual permission and possibly against their will, is to prevent harm to others. However, this is a dictum that is not always applied to public health, which is obliged to act to protect health in so many spheres such as water, sanitation, food and drug safety, and environmental health on a spectrum that extends to banning smoking in public places, mandating food fortification, and many other areas for improved population health in a civil society.

Failure to act is an action, and when there is convincing evidence of a problem that can be alleviated or prevented entirely by an accepted and demonstrably successful intervention, then the onus is on the public health leader/authority to advocate such action and to implement it as best as possible under the existing conditions. Failure to do so is a breach of “good standards of practice” and could be unethical. Inertia of the public health system in the face of evidence of a demonstrably effective modality such as adoption of state-of-the-art vaccines or fortification of flour with folic acid to prevent birth defects would come under this categorization and may even constitute neglect and unethical practice. This is not an easy categorization because there is often disagreement and even opposition to public health interventions, as was the case in opposition to vaccination long after Jenner’s crucial discovery of this procedure in the late eighteenth century. This idea is also a significant problem true today with opposition to many proven measures such as immunization, fluoridation or fortification of basic foods. Box 13.5 shows the ethical standards of the American Public Health Association of 2002.

Principles of Ethical Public Health Practice: American Public Health Association, 2002

1. Public health should address the fundamental causes of disease and requirements for health, aiming to prevent adverse health outcomes.
2. Public health should achieve community health in a way that respects the rights of individuals in the community.
3. Public health policies, programs, and priorities should be developed and evaluated through processes that ensure an opportunity for input from community members.
4. Public health should advocate and work for the empowerment of disenfranchised community members, aiming to ensure that the basic resources and conditions necessary for health are accessible to all.
5. Public health should seek the information needed to implement effective policies and programs that protect and promote health.
6. Public health institutions should provide communities with the information they have that is needed for decisions on policies or programs and should obtain the community’s consent for their implementation.
7. Public health institutions should act in a timely manner on the information they have within the resources and the mandate given to them by the public.
8. Public health programs and policies should incorporate a variety of approaches that anticipate and respect diverse values, beliefs, and cultures in the community.
9. Public health programs and policies should be implemented in a manner that most enhances the physical and social environment.
10. Public health institutions should protect the confidentiality of information that can bring harm to an individual or community if made public. Exceptions must be justified on the basis of the likelihood of significant harm to the individual or others.
11. Public health institutions should ensure the professional competence of their employees.
12. Public health institutions and their employees should engage in collaborations and affiliations in ways that build the public’s trust and the institution’s effectiveness.

The problem of refusals of vaccination has become an issue in the US mainly among upper middle class families. In Western Europe delay in updating immunization programs such as the two doses of measles policy in the past has created a situation of measles outbreaks across Europe since 2010 with many cases among unimmunized children or among young adults or those with only one dose and waning immunity. In many low- and medium-income countries funding levels for health are minimal leading to the delay in professional or governmental acceptance of “new” vaccines. This has been a serious issue but international donors have helped countries in sub-Saharan Africa to expand the range of vaccines in their routine programs with important life saving vaccines such as rotavirus and hemophilus influenza B. Underfunding for health is an ethical dilemma in many low- and medium-income countries. In former Soviet countries including the Russian Federation much of the overall low level of funding for health is due to their declining, but still relatively high, acute-care hospital bed supply with much longer average length of hospital stay leaving primary care and upgrading of immunization lagging.

Closure of hospitals involves difficult political and ethical decisions and is a source of dispute between central health authorities, the medical professions, and local communities. Health reforms in many industrialized countries, such as reducing hospital bed supplies, managed care systems, promoting cost containment, and reallocation of resources raise ethical and political issues often based on vested interests such as private insurance systems, hospitals, and private medical practitioners (see Chapters 8 and 15Chapter 8Chapter 15).

Where there is a high level of cumulative evidence from professional literature and from public health practice in “leading countries” with a strong scientific base and case for action on a public health issue, when does it become bad practice or even unethical public health practice to ignore and fail to implement such an intervention? Such ethical failures occur frequently and widely. For example, is it unethical to not fortify grain products with folic acid and salt with iodine when there is overwhelming evidence of safety and cost effectiveness? Should there be a recommended European immunization program; should milk be fortified with vitamin D; should vitamin and mineral supplements be given to pregnant and lactating women, and children; should all newborns be given vitamin K intramuscularly routinely? Other examples include the issues of fluoridation of water supplies and opposition to genetically modified crops or generic drugs in African countries. These issues are continuously debated and the responsibility of the trained public health professional is to review the international literature on a topic and formulate a position based on the cumulative weight of evidence. It is not possible to wait for indisputable evidence because in epidemiology and public health, this rarely occurs. This is another reason that guidelines established by respected agencies and professional bodies free from financial obligations to vested interest groups are essential to review evidence which accumulates on a continuing basis on many issues thought to have been resolved or which appear de novo.

A recent public health issue has been the banning of trans fats in baking and cooking, with legislation in New York City and some upstate New York State counties. The US Food and Drug Administration (USFDA) has declared trans fats, found in many popular processed foods, like baked goods and frozen foods, to be unsafe for consumption as they contribute to heart disease. The USFDA promotes manufacturer compliance and will regulate banning of use of trans fats by 2018, which is expected to reduce coronary heart disease and prevent thousands of fatal heart attacks every year. The USFDA reports that between 2003 and 2012, consumer trans fat consumption decreased about 78 percent and that the labeling rule and industry reformulation of foods were key factors in informing healthier consumer choices and reducing trans fat in foods. While trans fat intake has significantly decreased, the current intake remains a public health concern. The Institute of Medicine (IOM) recommends that consumption of trans fat be as low as possible while consuming a nutritionally adequate diet.

The WHO European Region reports that five European countries are in the process of banning trans fats through regulation, while others have decided to use self-regulatory mechanisms. On the other hand, virtually no countries in the European Region fortify flour with folic acid to prevent birth defects (neural tube defects), a lapse in current international public health standards. Along with rising incidence of rickets in infancy due to lack of sun exposure and lack of vitamin D supplements in pregnancy care, birth defects and severe rickets are increasing especially among dark skinned mothers in full body clothing for religious reasons. Most consumers do not know that some processed food categories contain large amounts of trans fats. Consumption in some population groups, particularly poorer people, can be very high. Removing trans fats from the food supply is one of the most straightforward public health interventions for reducing the risk of cardiovascular diseases and some cancers, and improving diets. A study comparing myocardial infarctions in New York counties that banned trans fat usage to counties that did not showed a greater reduction in acute myocardial infarctions in the counties that had banned trans fats. The ethical issue will be to see the rate of acceptance of this finding in other jurisdictions versus traditional opposition to too much interference by the state. The same issue regarding folic acid fortification of flour to reduce birth defects is similarly both a professional and ethical question. Virtually all European countries have ignored the evidence and fail to adopt mandatory fortification thus harming poorer population groups with less money to buy healthier foods. The delay in implementation of proven safe and effective public health measures is one of the key ethical issues in public health practice.

Ethical Issues

Coleman et al. discuss global issues in public health ethics with emphasis on disparities in health status; access to health care and the benefits of medical research; responding to the threat of infectious diseases; efforts to contain the spread of infectious diseases; international cooperation in health monitoring and surveillance (e.g., International Health Regulations); exploitation of individuals in low-income countries; health promotion, participation, transparency, and accountability. The global Millennium Development Goals (MDGs) and the follow-up Sustainable Development Goals (SDGs) reflect a consensus on objectives and a respectable degree of international support by donor countries. Strong networks such as the Global Vaccine Alliance involve international organization (e.g., WHO, UNICEF, World Bank), donor countries and private donors (e.g., Bill and Melinda Gates Foundation, Carter Foundation, Rotary Club and many others), with a strong track record of mobilizing funds and cooperation with private industry to raise immunization coverage and inclusion of new vaccines in many low income countries and in NTD elimination programs.

Recent public health emergencies involving anthrax, severe acute respiratory syndrome (SARS), Ebola, and Zika viruses have been declared “public health emergencies” and dramatized the need for restrictive public health measures. These include quarantine, isolation, and rationing of vaccines in short supply. Policy-makers and front-line care providers face difficult ethical questions in such cases which can be expected to occur with new challenges in the future. Support during the Ebola outbreak in West Africa in 2014–16 and Zika spreading out from Brazil in 2016–17 has been criticized as bumbling and inadequate, but did indicate strong levels of international cooperation and shared global concern. This most recent Ebola epidemic was the longest and most deadly in history, resulting in nearly 29,000 cases and over 11,000 deaths in Guinea, Liberia, and Sierra Leone. Several potentially useful therapeutic agents were available in 2014 that had been tested on animals, and limited early studies of the safety of vaccine candidates for humans. However, the affected countries struggled to deal with the rapidly escalating epidemic and the growing number of patients. Médecins sans Frontiére (MSF) provided the front-line treatment and infection control, and warned that the epidemic was “out of control” and would require a massive international response. First responders in many settings show the way in ethical behavior in calamitous situations such as the Syrian civil war where civilians as well as medical facilities are bombed and gassed deliberately by government and foreign forces.

National, international, and local representatives play a critical role in preparing the global community for unexpected epidemics. Research, with sound clinical trials based on best practices for improving clinical care and vaccines for prevention to protect at risk populations, are needed during and between public health emergencies. Research efforts to develop vaccines for these emerging infectious diseases and others such as malaria and dengue are impressive and will hopefully bring forth lifesaving vaccines on large scales in the coming decade. In the case of Ebola, none of the clinical trials have reached definitive conclusions about efficacy in the search for therapeutics, but vaccine trials have identified vaccines that are safe and effective. The availability of financial, organizational, and professional resources to tackle such issues is an underlying problem of priority decision-making with professional, ethical, and moral standards.

Public health may face the challenge of pandemic influenza—such as the avian flu—with decisions regarding allocation of vaccines, treatment of massive numbers of patients arriving at hospitals in acute respiratory distress with very limited resources to cope, coping with sick or absent staff, and many other issues such as not only individual life-and-death situations, but large scale mortality. The ethical questions will be replaced by struggles to cope. Preparation for such potential catastrophic events will be a challenge to public health organizations and the health system generally.

Public health is tasked with monitoring population health and implementing measures to reduce morbidity or mortality of the population within ethical norms of societal acceptability. Advancing public health goals, with minimal restriction of individual liberties, will reduce the burden of disease and mortality, while reducing inequities and advancing social justice. This requires trained professionals to monitor population-based data and research with translation of new science into practice. Programs to achieve these objectives must be evidence-based to substantiate that they will achieve these goals with minimal restrictions, but with public support for those vital to ethical and successful public health.

Teaching Public Health Ethics

The aim of ethics education in public health should be to enhance the ability of public health professionals, policy makers and citizens to reason rationally about the moral dilemmas and value conflicts inherent to human rights, social justice, and the application of knowledge and technology in the health sciences and in public health measures.

Ethics analysis typically involves the capability to identify the public health issue and its contribution to health of the population. This requires a review of the professional literature to know the state-of-the-art techniques and to be able to articulate the factual information to the decision-makers and the public. This requires identification of the ethical issues of the case and to identify the “stakeholders”—those whose rights and interests will be most directly affected by the decisions made and the values, concerns, and information at stake in the case. The ability to identify options available to decision-makers in the case is vital to making the “case for action” and the decision-making process, before, during and after a public health event or process as in pandemic preparedness. The cost of action versus inaction is a vital factor.

Training current faculty on public health ethics issues should be mandatory in schools of public health in order to incorporate ethics into existing courses of formal educational programs. This requires specific and mandatory courses on public health ethics along with incorporation of discussion of ethical issues in core courses in the program.

Defining and applying ethical and high standards of practice of medical care as well as public health requires an ideological commitment to individual and community sanctity of life. Ethics in health also requires commitment to advancement of health care and use of best practices of international standards to the maximum extent possible under the local conditions in which the professional is working. This is not an easy commitment as there is often dispute and outright hostility to public health activities in part because of past ethical distortions of great magnitude. But this is an optimistic field of activity by virtue of the great achievements it has brought to humankind. Preparation for disasters and unanticipated health emergencies can raise issues of security, quarantine, isolation, rationing of vaccines due to insufficient supplies—e.g., in influenza epidemics—or restrictions on community events or family burials as in the case of Ebola in West Africa in 2014–16.

Public health also faces slow responses to advances in the science of vaccines or in health promotion measures with proven efficacy. Addressing current issues is a vital part of the “New Public Health” and our ethical and professional commitments. The role of public health in climate change is both a professional and ethical issue, as are many other topics such as food fortification, fluoridation of community water supplies, access to birth control and other longstanding and new topics. Advancement in global health requires consensus of national governments and international bodies working together to alleviate poor health conditions with available professional standards and resource mobilization to achieve this goal. Most issues in public health have ethical aspects so that education on future public health requires adequate attention to the topic, perhaps best presented in case studies.

Ethical issues in public health include both definition of, and decisions to act on a problem, but also delay, avoidance, or inaction when best evidence available indicates action prevents harm to the population. Failure to act in a timely fashion or to allocate resources to meet clear health needs of a population can be unethical just as much as acting in a harmful way. While resource allocation is a political decision, failure to act can be as injurious and unethical as being directly responsible for harmful acts. Public health as a profession and a movement or ideology must be willing to point out the effects of nonaction as well as of ethical or nonethical acts. Compliance with evil is unethical and the preparation of public health workers requires understanding of how to differentiate, and to how to advocate for the better choices in policy and its implementation.

Recommendations

1. Ethics should be incorporated in all courses in public health as well as health policy and management programs.
2. Dedicated courses in ethics should be included in public health education curricula to provide interested students with an opportunity for more in-depth study.
3. Public health ethics along with public health law should be included in criteria for curricula as “cross cutting” courses required by accreditation agencies.
4. Public health ethics orientation workshops should be provided to help teachers in all topic areas of the curriculum, core and elective, incorporate ethics in their teaching material.
5. The topic of public health ethics should be incorporated in ongoing educational programs for practitioners in the broad multi-disciplinary fields of public health.
6. Public awareness and engagement efforts that accompany public health programs and interventions should incorporate some measure of ethics education.
7. Critical thinking about the values involved in a public health controversy is vital to combat the public health problem in question.
8. Recognition that the concepts of social solidarity and obligations as well as individual rights are fundamental in public health practice.
9. Recognition that emergency preparedness and response includes mandatory immunizations such as measles and other public health measures as in influenza or cholera control immunization.
10. Training in ethical studies should be part of public health training at all levels including continuing education.
11. Curriculum development should include awareness of ethical issues of artificial and natural catastrophes of the past century as well as current topics.
12. Case studies are valuable teaching tools and incorporated and examined in class discussion.
13. Teachers of other aspects of public health including epidemiology and health promotion should include ethics in their syllabi and course content.
14. Consideration should be given to development of Helsinki Committee procedures and review criteria for public health-related research based on data sets without individual identification in public health research proposals.
15. Teachers of ethics in public health should have dual training in public health and ethics.

Student Review Questions

1. Why was eugenics a popular topic in western countries among intellectuals during the early part of the 20 th century?
2. How was eugenics practiced in liberal democratic countries?
3. How did the eugenics idea become translated into mass murder of the handicapped in Germany, and then adapted to genocide of Jews and others in the Holocaust?
4. Why is incitement to genocide seen as a precursor and crime against humanity?
5. Why is approval of a “Helsinki Committee” needed before applying for a research grant?
6. Why is assisted death permitted in some jurisdictions, and what steps are needed to ensure this is solely based on the patient’s wishes?
7. Discuss the ethics of requiring children to be fully immunized before they can attend school.
8. What is the “Wakefield Effect”, and how is it affecting attitudes to immunization?
9. How should practicing doctors and public health explain mandatory chlorination, and fluoridation of community water supplies?
10. Is banning cigarette smoking in public places an infringement of individual rights?
11. Is parental refusal of immunization without a valid medical reason ethical?
12. Discuss what you think are ethical issues in public health.
13. Discuss what you think are ethical issues in medical practice.
14. Discuss public health ethics issues in global health.
15. Discuss ethical issues in medical and public health research.
16. Describe the historical and current meaning of the Nuremberg Trials, the Universal Declaration of Human Rights, the Helsinki Declaration and the Tuskegee experiments on public health and medical research ethics.
17. Discuss the role of the news and social media in investigation of public health issues and in spread of “pseudoscience” disinformation on public health topics such as vaccination, fluoridation, and food fortification.
18. Describe the lasting implication of the Tuskegee experiment for attitudes towards the public health profession in the US.

* This case report is largely derived and modified from Tulchinsky T.H., Varavikova E.A., The new public health, 3rd edition. Academic Press/Elsevier: San Diego, 2014, chapter 15 pages 804–816.

Up to 40pc of mental health conditions are linked to child abuse and neglect, study finds

Mother smiles proudly with her arm around her daughter.

In 1996, Ange McAuley was just 11 years old when ABC's Four Corners profiled her family living on Brisbane's outskirts.

At the time her mother was pregnant with her sixth child and her father had long ago moved back to Perth.

WARNING: This story contains details that may be distressing to some readers.

It was a story about child protection and the program was profiling the role of community volunteers helping her mother, who had been in and out of mental health wards.

Ange was the eldest and it fell to her to get her younger siblings ready for school.

By the time the new baby arrived, she would stay home and change nappies.

Polaroid of a young girl holding a birthday cake getting ready to blow out the candles.

"It was pretty crazy back then — I wasn't going to school a lot," she said.

By that age she was already holding a secret — she'd been sexually abused at age six by her stepfather, who would later be convicted of the crime.

"Back in the nineties, a lot of people kept stuff hidden and it wasn't spoken about outside of the family," she said.

"I've carried all these big burdens that weren't even mine. Sexual abuse happened to me. I didn't ask for it."

She says the trauma triggered a lifetime of mental health problems from substance abuse and self-harm as a teen, right through to post-natal depression.

Hidden source of our mental health crisis

A new study from the University of Sydney's Matilda Centre has established just how much Australia's mental health crisis can be traced back to this kind of childhood abuse and neglect.

The research has found that childhood maltreatment is responsible for up to 41 per cent of common mental health conditions including anxiety, depression, substance abuse, self-harm and suicide attempts.

The research, which draws on a 2023 meta-analysis of 34 research studies covering 54,000 people, found maltreatment accounted for 41 per cent of suicide attempts in Australia, 35 per cent of self-harm cases and 21 per cent of depression episodes.

Woman wearing black top smiles gently in office.

It defined childhood maltreatment as physical, sexual, emotional abuse, emotional or physical neglect and domestic violence before the age of 18.

Lead researcher Lucy Grummitt said it is the first piece of work to quantify the direct impact of child abuse on long-term mental health.

It found if childhood maltreatment was eradicated it would avert more than 1.8 million cases of depression, anxiety and substance use disorders.

"It shows just how many people in Australia are suffering from mental health conditions that are potentially preventable," she said.

Dr Grummitt said they found in the year 2023 child maltreatment in Australia accounted for 66,143 years of life lost and 118,493 years lived with disability because of the associated mental health conditions.

"We know that when a child is exposed to this level of stress or trauma, it does trigger a lot of changes in the brain and body," Dr Grummitt said.

"Things like altering the body's stress response will make a child hyper-vigilant to threat. It can lead to difficulties with emotion regulation, being able to cope with difficult emotions."

While some areas of maltreatment are trending down, figures from the landmark Australian child maltreatment study last year show rising rates of sexual abuse by adolescents and emotional abuse.

That study found more than one in three females and one in seven males aged 16 to 24 had experienced childhood sexual abuse.

Dr Grummit says childhood trauma can affect how the brain processes emotions once children become teens.

"It could be teenagers struggling to really cope with difficult emotions and certainly trauma can play a huge role in causing those difficult emotions," she said.

Mental health scars emerge early

For Ange, the trauma of her early years first showed itself in adolescence when she started acting out — she remembers punching walls and cars, binge drinking and using drugs.

"I would get angry and just scream," she said.

"I used to talk back to the teachers. I didn't finish school. Mum kicked me out a lot as a teenager. I was back and forth between mum and dad's."

By the time she disclosed her abuse, she was self-harming and at one point tried to take her own life.

Polaroid of a teenage girl showing a thumbs-up.

"I was just done," she said.

"I was sick of having to get up every day. I didn't want to do it anymore."

Later on, she would have inappropriate relationships with much older men and suffered from depression, including post-natal depression.

"It's definitely affected relationships, it's affected my friendships, it's affected my intimate relationships," she said.

"Flashbacks can come in at the most inappropriate times — you're back in that moment and you feel guilt and shame.

"I feel like it's held me back a lot."

Calls for mental health 'immunisation'

Dr Grummitt said childhood abuse and neglect should be treated as a national public health priority.

In Australia, suicide is the leading cause of death for young people.

"It's critical that we are investing in prevention rather than putting all our investments into treatment of mental health problems," she said.

Her team has suggested child development and mental health check-ins become a regular feature across a person's lifetime and have proposed a mental health "immunisation schedule".

Chief executive of mental health charity Prevention United, Stephen Carbone, said they estimate that less than 1 per cent of mental health funding goes toward prevention.

"There's been a big steady increase in per capita funding for mental health over the last 30 years but that hasn't translated into reductions," Dr Carbone, a GP, said.

"You're not going to be able to prevent mental health conditions unless you start to tackle some of these big causes, in particular child maltreatment."

Man wearing suit smiles in front of orange banner with text saying awareness advocacy and research innovation.

He said most of Australia's child protection system was about reacting to problems rather than trying to prevent them.

"If you're not tackling the upstream risk factors or putting in place protective factors you just keep getting more and more young people experiencing problems and services being overwhelmed," he said.

Mother smiles adoringly with her arm around her daughter as they look into each other's eyes.

Now a mother of two teens herself, Ange says she wants to break the cycle and has been going to therapy regularly to help identify and avoid destructive patterns that she's seen herself fall into.

"I love my girls so much and I want better for them."

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'It's a really massive deal': Unpacking what's going on with Gen Z and ways to improve teen mental health

'The air went out of the room': Shocking new statistics on the abuse and neglect of Australian children

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Are We Talking Too Much About Mental Health?

Recent studies cast doubt on whether large-scale mental health interventions are making young people better. Some even suggest they can have a negative effect.

A portrait of Lucy Foulkes, who wears a gray sweater and black pants and sits on a bench in a garden area outside a building.

By Ellen Barry

In recent years, mental health has become a central subject in childhood and adolescence. Teenagers narrate their psychiatric diagnosis and treatment on TikTok and Instagram. School systems, alarmed by rising levels of distress and self-harm, are introducing preventive coursework in emotional self-regulation and mindfulness.

Now, some researchers warn that we are in danger of overdoing it. Mental health awareness campaigns, they argue, help some young people identify disorders that badly need treatment — but they have a negative effect on others, leading them to over-interpret their symptoms and see themselves as more troubled than they are.

The researchers point to unexpected results in trials of school-based mental health interventions in the United Kingdom and Australia: Students who underwent training in the basics of mindfulness , cognitive behavioral therapy and dialectical behavior therapy did not emerge healthier than peers who did not participate, and some were worse off, at least for a while.

And new research from the United States shows that among young people, “self-labeling” as having depression or anxiety is associated with poor coping skills, like avoidance or rumination.

In a paper published last year , two research psychologists at the University of Oxford, Lucy Foulkes and Jack Andrews, coined the term “prevalence inflation” — driven by the reporting of mild or transient symptoms as mental health disorders — and suggested that awareness campaigns were contributing to it.

“It’s creating this message that teenagers are vulnerable, they’re likely to have problems, and the solution is to outsource them to a professional,” said Dr. Foulkes, a Prudence Trust Research Fellow in Oxford’s department of experimental psychology, who has written two books on mental health and adolescence.

Until high-quality research has clarified these unexpected negative effects, they argue, school systems should proceed cautiously with large-scale mental health interventions.

“It’s not that we need to go back to square one, but it’s that we need to press pause and reroute potentially,” Dr. Foulkes said. “It’s possible that something very well-intended has overshot a bit and needs to be brought back in.”

This remains a minority view among specialists in adolescent mental health, who mostly agree that the far more urgent problem is lack of access to treatment.

About 60 percent of young Americans with severe depression receive no treatment, according to Mental Health America, a nonprofit research group. In crisis, desperate families fall back on emergency rooms, where teens often remain for days before a psychiatric bed opens up. There is good reason to embrace a preventive approach, teaching schoolchildren basic skills that might forestall crises later, experts say.

Dr. Foulkes said she understood that her argument runs counter to that consensus, and when she began to present it, she braced for a backlash. To her surprise, she said, many educators reached out to express quiet agreement.

“There’s definitely a fear about being the one to say it,” she said.

A deflating result

In the summer of 2022, the results of a landmark study on mindfulness training in British classrooms landed — like a lead balloon.

The trial, My Resilience in Adolescence, or MYRIAD, was ambitious, meticulous and expansive, following about 28,000 teenagers over eight years. It had been launched in a glow of optimism that the practice would pay off, improving the students’ mental health outcomes in later years.

Half of the teenagers were trained by their teachers to direct their attention to the present moment — breathing, physical sensations or everyday activities — in 10 lessons of 30 to 50 minutes apiece.

The results were disappointing . The authors reported “no support for our hypothesis” that mindfulness training would improve students’ mental health. In fact, students at highest risk for mental health problems did somewhat worse after receiving the training, the authors concluded.

But by the end of the eight-year project, “mindfulness is already embedded in a lot of schools, and there are already organizations making money from selling this program to schools,” said Dr. Foulkes, who had assisted on the study as a postdoctoral research associate. “And it’s very difficult to get the scientific message out there.”

Why, one might ask, would a mental health program do harm?

Researchers in the study speculated that the training programs “bring awareness to upsetting thoughts,” encouraging students to sit with darker feelings, but without providing solutions, especially for societal problems like racism or poverty. They also found that the students didn’t enjoy the sessions and didn’t practice at home.

Another explanation is that mindfulness training could encourage “co-rumination,” the kind of long, unresolved group discussion that churns up problems without finding solutions.

As the MYRIAD results were being analyzed, Dr. Andrews led an evaluation of Climate Schools, an Australian intervention based on the principles of cognitive behavioral therapy, in which students observed cartoon characters navigating mental health concerns and then answered questions about practices to improve mental health.

Here, too, he found negative effects. Students who had taken the course reported higher levels of depression and anxiety symptoms six months and 12 months later.

Co-rumination appears to be higher in girls, who tend to come into the program more distressed, as well as more attuned to their friends, he said. “It might be,” he said, “that they kind of get together and make things a little bit worse for each other.”

Dr. Andrews, a Wellcome Trust research fellow, has since joined an effort to improve Climate Schools by addressing negative effects. And he has concluded that schools should slow down until “we know the evidence base a bit more.” Sometimes, he said, “doing nothing is better than doing something.”

The awareness paradox

One problem with mental health awareness, some research suggests, is that it may not help to put a label to your symptoms.

Isaac Ahuvia, a doctoral candidate at Stony Brook University, recently tested this in a study of 1,423 college students . Twenty-two percent “self-labeled” as having depression, telling researchers “I am depressed” or “I have depression,” but 39 percent met the diagnostic criteria for depression.

He found that the students who self-labeled felt that they had less control over depression and were more likely to catastrophize and less likely to respond to distress by putting their difficulties in perspective, compared with peers who had similar depression symptoms.

Jessica L. Schleider, a co-author of the self-labeling study, said this was no surprise. People who self-label “appear to be viewing depression as a biological inevitability,” she said. “People who don’t view emotions as malleable, view them as set and stuck and uncontrollable, tend to cope less well because they don’t see a point to trying.”

But Dr. Schleider, an associate professor of medical social sciences at Northwestern University and the director of the university’s Lab for Scalable Mental Health, pushed back on the prevalence inflation hypothesis. She disagreed with the claim that students are overdiagnosing themselves, noting that Mr. Ahuvia’s findings suggest otherwise.

Awareness campaigns are bound to have multiple effects, helping some students and not others. And ultimately, she argued, the priority for public health should be reaching young people in the most distress.

“The urgency of the mental health crisis is so clear,” she said. “In the partnerships that I have, the emphasis is on the kids truly struggling right now who have nothing — we need to help them — more so than a possible risk for a subset of kids who aren’t really struggling.”

Maybe, she said, we need to look beyond the “universal, school-assembly-style approach,” to targeted, light-touch interventions, which research has shown can be effective at decreasing anxiety and conduct disorders, especially in younger children.

“There is a risk of throwing the baby out with the bathwater,” Dr. Schleider said. “The response can’t be ‘Forget all of it.’ It should be ‘What about this intervention was unhelpful?’”

Other researchers echoed her concern, pointing to studies that show that on average, students benefit from social and emotional learning courses.

One of the largest, a 2023 meta-analysis of 252 classroom programs in 53 countries, found that students who participated performed better academically, displayed better social skills and had lower levels of emotional distress or behavioral problems. In that context, negative effects in a handful of trials appear modest, the researchers said.

“We clearly have not figured out how to do them yet, but I can’t imagine any population-based intervention that the field got right the first time,” said Dr. Andrew J. Gerber, the president and medical director of Silver Hill Hospital and a practicing child and adolescent psychiatrist.

“Really, if you think about almost everything we do in schools, we don’t have great evidence for it working,” he added. “That doesn’t mean we don’t do it. It just means that we’re constantly thinking about ways to improve it.”

‘We want everyone to have it’

These debates are taking place a long way away from classrooms, where mental health curriculums are increasingly commonplace.

Allyson Kangisser, a counselor at Woodsdale Elementary School in Wheeling, W.Va., said the focus in her school is on basic coping skills. In the early grades, students are asked, “What things can you do to take care of yourself when you’re having big feelings?”

Starting in third grade, they take on more complex material, such as watching cartoon characters to distinguish transient stress from chronic conditions like depression. “We’re not trying to have them diagnose themselves,” Ms. Kangisser said. “We are saying, what do you feel — this one? Or this one?”

At the school’s sixth annual mental health fair last month, Woodsdale students walked through a giant inflatable brain, its lobes neatly labeled. They did yoga stretches and talked about regulating their emotions. Ms. Kangisser said the event is valuable precisely because it is universal, so troubled children are not singled out.

“The mental health fair, everybody does it,” she said. “It’s not ‘You need it, and you don’t.’ We want everyone to have it, because you just never know.”

By the time the students reach college, they will have absorbed enormous amounts of information about mental health — from school, but also from social media and from one another.

Dr. Jessica Gold, chief wellness officer for the University of Tennessee system, said the college students she sees are recognizably different — more comfortable speaking about their emotions and more willing to be vulnerable. They also overuse diagnostic terms and have the self-assurance to question a psychiatrist’s judgment.

“It’s sort of a double-edged sword,” she said. “We want people to talk about this more, but we don’t want that to lead to overdiagnosis or incorrect diagnosis or overtreatment. We want it to lead to normalizing of having feelings.”

Lucy Kim, a Yale senior who has lobbied for better mental health support on campus, described the prevalence inflation hypothesis as “disheartening, dismissive and potentially dangerous,” providing another way to discount the experiences of young people.

“As a college student, I see a generation of young people around me impacted by a depth and breadth of loneliness, exhaustion and disillusionment suggestive of a malaise that goes deeper than the general vicissitudes of life,” said Ms. Kim, 23.

Overdiagnosis does happen, she said, and so does glorification of mental health disorders. But stigma and barriers to treatment remain the bigger problem. “I can confidently say I have never heard anyone respond to disclosures of depression with ‘That’s so cool, I wish I had that, too,’” she said.

Ellen Barry is a reporter covering mental health for The Times. More about Ellen Barry

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These simple and proven strategies will help you manage stress , support your mental health and find meaning in the new year.

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