qualitative research methods when to use them and how to judge them

DOI: 10.1093/humrep/dev334
Corpus ID: 25074477

Qualitative research methods: when to use them and how to judge them.

K. Hammarberg , M. Kirkman , S. D. Lacey
Published in Human Reproduction 1 March 2016

749 Citations

Interdisciplinary clinicians’ attitudes, challenges, and success strategies in providing care to transgender people: a qualitative descriptive study, the effectiveness of nurturing approaches on primary-aged children in the uk: a systematic review, early pregnancy assessment services in australia: what psychosocial support is available a qualitative study., looking beyond the numbers: qualitative research in respiratory medicine – editorial reviewing and applying qualitative research to inform management of chronic obstructive pulmonary disease, perceived barriers of using modern family planning methods among women in jordan: a qualitative study, what are antenatal maternity care needs of women who conceived through fertility treatment: a mixed methods systematic review, beliefs, perceptions, and tendencies of patients with diabetes towards folk-healing alternatives: a qualitative analysis, ethical conflicts in nursing: an interview study, “i mean who likes pedophiles”; psychological assessments of men who have sexually offended. the assessees’ experiences, psychiatry peer review groups in australia: a mixed-methods exploration of structure and function, 25 references, evaluative criteria for qualitative research in health care: controversies and recommendations, child interests in assisted reproductive technology: how is the welfare principle applied in practice, women's experiences of endometriosis: a systematic review and synthesis of qualitative research, how can systematic reviews incorporate qualitative research a critical perspective, eshre guideline: routine psychosocial care in infertility and medically assisted reproduction-a guide for fertility staff., investigation of staff and patients' opinions of a proposed trial of elective single embryo transfer., parent identity and 'virtual' children: why patients discard rather than donate unused embryos., the problem of rigor in qualitative research, families working it out: adolescents' views on communicating about donor-assisted conception., saviours and satyrs: ambivalence in narrative meanings of sperm provision, related papers.

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Qualitative research methods: when to use them and how to judge them

Epidemiology and Preventive Medicine Alfred Hospital

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Original language	English
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T1 - Qualitative research methods

T2 - when to use them and how to judge them

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Published: 01 March 2005

Qualitative research: Thoughts on how to do it; how to judge it; when to use it

Nancy Press 1

Genetics in Medicine volume 7 , pages 155–158 ( 2005 ) Cite this article

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Qualitative methods have been gaining acceptance in biomedical research over the past decades. 1 , 2 Nevertheless, skepticism remains about the validity, reliability, generalizability and general value of this type of work. The most enthusiastic acceptance of the qualitative research has been as a way to garner conceptual information about understudied domains in order to generate hypotheses for later quantitative studies. But many qualitative researchers reject this limitation on the perceived value of their approach. They assert that qualitative research asks different sorts of questions, ones that quantitative methods simply cannot answer.

The impetus for writing this editorial was to accompany and help situate an excellent example of the appropriate use of qualitative research methods. In this issue of Genetics in Medicine , Geller et al. 3 compare how scientists and science writers view and describe the same set of genetics discoveries. The authors are not interested in measuring the amount of convergence on “facts” that exists between those who discover and those who describe discoveries to the public, but rather on obtaining a deeper understanding of the relationship and interaction between them. The study suggests, among other things, that a too quick assumption of misunderstanding and cross-purposes between scientists and science writers is unwarranted.

The purpose of this editorial is briefly to examine what qualitative research does, how it does it, and how a reader unfamiliar with this method may be able to judge the merit and believability of a particular study using qualitative methods.

WHAT'S “TRUTH” GOT TO DO WITH IT?

There is an assumption, not least among qualitative researchers, that the argument between qualitative and quantitative methods is reducible to an argument over positivism. That is, it is assumed that quantitative social and behavioral science presuppose a regularity in social phenomena similar to that found in the natural world and aim to construct theories on a level of generality and regularity similar to that assumed to exist in the natural sciences. Conversely, it is assumed that qualitative methods are based on the view that all events, actors, and experiences are particular, completely situated in a unique experience, socially constructed and therefore immune to prediction or replicable explanation. I would argue that neither quantitative nor qualitative social scientists really hold these views. Psychologists using survey methods, for example, are aware of research participants' desires for social acceptability and how that may skew responses even on validated instruments. And very few qualitative researchers study the experience of an individual without the desire to illuminate the experiences of other individuals in a similar situation.

Closer to the heart of the matter is the fact that quantitative methods already entail a position on the nature of social truth. It is contained within the discipline of statistics and bounded by the wisdom of the null hypothesis – a study can never prove a point but merely disprove the counter point. Qualitative researchers, however, drawn to the richness and ambiguity of words, must constantly confront their views on the nature of (social) truth. And, in fact, varying among themselves they discuss this issue a great deal.

At one end of the spectrum is the position marked by doubts about the ability of a researcher to very accurately observe any phenomenon outside him/herself. At its most radical, this work is thus focused on the “self” of the researcher, who becomes a mirror through which the phenomenon is glimpsed. It is likely the association of this postmodern stance with qualitative methods that has led to the most skepticism from quantitative researchers. But qualitative researchers who work in the biomedical field are generally doing “applied” social science and rarely take this position. In fact, many believe that this demurral about the ability to ever know anything leads merely to paralysis.

At the other end of the spectrum are qualitative researchers who use semi-structured interview guides with large samples and clearly delineated methods for inter-coder reliability. They tend to keep their analyses very close to the overt level of their participants' statements, turning participants' words into codes, which can then be tabulated and counted. But this position has been subject to criticism as well. For example, well-known medical sociologist, Kathy Charmaz, told a group of qualitative researchers that she found it ironic that many of them had moved so far away from the initial roots of qualitative methods – the realization of the complexity of processes of human interaction. Instead, they have come to “argue that people will tell you what most concerns them in the setting. I contend that they often cannot. The most important processes are tacit.” 4

I would contend that it is between these two poles that the best qualitative research is done and that despite varying methods, qualitative research is unified by its struggle to make useful and accurate statements about the social world while constantly acknowledging that:

Each person's “truth” in any situation will be relative, partial, and dependent on his/her current context; thus there will always be multiple truths in any situation.

Each person has a strong drive to create a coherent narrative of his/her life. This produces rich material which gives indications of what is most important to an individual in a particular social setting, but the coherence of the story is illusory and misleading if seen as merely an accurate recitation of events.

Individuals' reasons for their actions and choices are often not directly accessible to them; in addition, people can deeply hold multiple and even conflicting opinions on the same topic.

METHODS OF DATA COLLECTION

It is perhaps a giddy delight at the rightness of these observations that more than anything else bonds qualitative researchers together. However, after the realization comes the conundrum: If there are so many limitations on identifying and eliciting the “truth” about any situation and yet one wants to make a contribution to knowledge, what methods can one possibly use to do one's work? The answer is a wide array of methods ranging from the very time-consuming practice of ethnography to semi-structured interview methods.

Ethnography is the quintessential qualitative method. The researcher is a “participant-observer” who spends long periods of time in the setting of interest, conducting interviews, talking casually to individuals, observing interactions and conversations and being there at various moments of decision as well as reflection. Renee Anspach, for example, spent 16 months observing neonatal intensive care units (NICUs). 5 Her work richly describes the texture of the conflicts in which nurses and physicians often found themselves around the prognoses of critically ill infants, and it shows how these conflicts were based in part on the fact that what each intuitively counted as “data” differed. She also observed NICU staff move parents to the periphery of decisions and ‘…employ a set of practices to elicit parents' assent to decisions that had already been made’ (p. 166) 5 . Her ethnography is a recreation of an entire world and an illumination of on-the-ground, on-the-spot clinical ethics.

However, ethnography is ultimately a very luxurious method of working and few researchers past the stage of a dissertation have time to do such work. Qualitative researchers thus try to approach the advantages of field research using other methods. One of the most commonly cited approaches is what sociologist, Erving Goffman, called “triangulation.” Goffman believed that what people say about a situation often differs from what they actually do in that situation and he thus preferred to observe people's actions or, if doing interviews, to get at least three individuals' “take” on the same situation – thus, “triangulation.” The term has expanded to also mean “triangulating” on a problem by bringing different types of data to bear.

For example, Carole Browner and I studied the use of maternal serum alpha fetoprotein testing (MSAFP) by an ethnically diverse group of women shortly after the California state mandate to offer this test. 6 We designed a study with multiple sources of data including observations of prenatal intake appointments and group educational sessions; interviews with women at two points in their pregnancies; interviews with the nursing staff that did the prenatal intakes; compilation of all the educational materials women were given about MSAFP; and, ultimately, a chart review to calculate the percentage of test uptake and its variability based on sociodemographics. This approach proved crucial to our eventual analysis, especially as we found that well over 80% of the women had accepted MSAFP testing, and their reported reason was most commonly “why not?” and “I want to do everything I can to help my baby.” It was only through a process of data triangulation that we arrived at our analysis of how the medicolegal pressures on physicians and nurses to offer testing interacted with the beliefs of both health care providers and pregnant women about such difficult to discuss topics as disability and pregnancy termination. The use of almost precisely the same language to describe the purposes and advantages of routine prenatal care with the very different purposes of prenatal genetic testing was an important clue in our analysis of the “shared silences” of all participants.

Anthropologist, Clifford Geertz, famously stated that the role of ethnography is to provide “thick description” rather than prediction. Ethnography and complex triangulation methods can provide such thick descriptions because they are able to invest time in what might be called “thick observation.” The questions such studies pose tend to be large and of the form what is the experience of X like? when “X” may be as broad as the construction of a new sense of self following a disease diagnosis, or How does Y occur when “Y” is as diffuse as how decisions are made to terminate life supports in a NICU.

Most frequently, however, qualitative research in the biomedical realm depends on interviews alone. In an interview only study, qualitative researchers are cut off from the approaches that best fit with our view of the complex, multiplicity of social truth. Various approaches are taken to try to deal with this challenge.

One technique used by many investigators is to interview the same participant multiple times. This allows the researcher to observe processes unfold over time as themes lose or gain in importance; to “test” predictions made in one interview (e.g. my husband will not support my decision to not have prenatal testing ) against what has actually occurred by the time of the next interview. It provides another version of “triangulation,” as participants provide their own, implicit comparison. Multiple contacts also allow for greater intimacy to develop between researcher and participant, thus leading, it is hoped, to more honest conversation and less “stage-managed” interview behavior.

But multiple interviews also constitute a large commitment of resources and logistics and so many qualitative projects involve only one interview with each participant. At this point the question is what sort of interview to do. The options fall under the broad categories of open-ended and semi-structured interviews. Open-ended interviews have very loose interview guides which generally pose 10-20 general questions. The answers are not meant to be strictly comparable from one participant to the next but rather to stimulate each participant to expand on the same general areas. For example, open-ended interviews done by Dobscha et al. 7 with physicians in Oregon who had received requests for physician-assisted suicide, asked each physician to tell the story of the request that stayed most in his/her mind. The interviewer then followed up to get the participant to describe the experience as fully as possible. The researcher who chooses to do open-ended interviews will, as a general rule, have interviews that are longer (two hour interviews are not uncommon) and the number of participants will be fewer, among other reasons in order to keep the data set to a manageable size.

Semi-structured interviews, on the other hand, are generally of shorter length and the sample includes a larger number of participants. Interview guides have a set structure which is generally pilot tested and revised before actual data collection begins and each question will assiduously be asked of each participant. Although the interviewer will be encouraged to follow up intriguing responses, standardized follow-up probes are likely to be included in the interview guide to further encourage comparability of responses.

The purposes to which such interviews can be put are different from more expansive qualitative research. The responses to questions will be comparatively shorter, the language to analyze less rich, and the interview situation more artificial. Samples are thus usually constructed to assure capturing the contrasts which have been determined ahead of time to be of interest in the study. For example, in work Wylie Burke and I did on women's understandings of breast cancer, risk and genetic susceptibility testing, we were particularly interested in the possible differences one might find depending both on women's race/ethnic background and on their personal and familial history of breast cancer. We therefore purposively selected participants to fill a predetermined sampling grid with three race/ethnic groups and four levels of breast cancer history and risk, with 20 women in each category for a planned sample of 240 women.

Once one has reached this distance from ethnography, it is fair to ask, what makes these interview studies qualify as qualitative research? One obvious answer is that participants answer questions in their own words and at whatever length they wish. But perhaps a better answer is that qualitative research is as much defined by the way data are analyzed as by the way they are collected.

METHODS OF DATA ANALYSIS

Most qualitative researchers who do interview studies use data analysis methods that are beholden to some extent to the “grounded theory” methods of Glaser and Strauss. When these sociologists wrote The Discovery of Grounded Theory in 1967 8 , they were concerned that sociology was suffering from a kind of methodologic rigor mortis that focused on verification of existing theory rather than figuring out if the theory itself had much conceptual merit. Glaser and Strauss wanted to reverse this trend by developing a systematic approach to inductive methods which could unearth what was in the data themselves. The method they proposed begins by merging the timelines of data collection and data analysis, beginning analysis concomitant with even the earliest stages of data collection. The intent is to locate themes of interest directly from the data and to be able to assess if the interviews already completed have paid sufficient attention to those themes. If not, further interviews are conducted. This is called “theoretical sampling” and means that the size of the sample is not set ahead of time, a fairly controversial aspect of the method.

However, it is in its meticulous attention to data coding that grounded theory has had its deepest influence on qualitative research. The method provides a step-by-step approach to taking a mass of words (and/or observations) and successively reducing them to manageable units of analysis. Coding begins with an initial set of codes which name the overt content of a sentence (e.g. “breast cancer” or “reaction of husband to illness”) and then moves on to more detailed coding, often using the participant's own language. Thus, a participant in talking about changes in her life following the onset of a disability might say, “ there's never enough time to get everything done ,” which could be captured in a short-hand code as “time pressures of disability.” This might be an area about which the researchers did not specifically ask. However, by the creation of this code, they could now return to the data from other interviews to look to see if this was, in fact, a common experience – or not. And, if so, with what other characteristics of participant, of situation, of disability might it co-occur and how might it affect other parts of the participant's experience of illness. Returning to already read interviews to, as it were, interrogate the data on the basis of new codes, is referred to as the “constant comparative method.” As coding progresses, “theoretical memos” are written, moving away from coding and toward finished analysis. These memos are also meant to leave a “trail” showing how the analysis was built up. All this ends when the researcher believes s/he has reached a point of “saturation” in understanding and a literal picture has emerged of the entire domain under study and how parts of it operate, affect each other, and are connected.

Rigorous methods of coding, however, do not completely solve the issue of epistemology which has never ceased to haunt qualitative research. How, after all, does one know that one's view of the data is correct, especially if one's data consists of only one interview with each participant and no other methods of triangulation? One commonly accepted method is to make data analysis a team activity. A good description of this approach appears in the article by Geller et al.: “ Following review of a subset of the initial interview transcripts by the investigators to identify themes, a codebook was developed through an iterative process of transcript review and refinement of subcodes and definitions. Two coders…. double-coded sets of transcripts and refined code definitions until intercoder reliability of over 80% was achieved, the remaining interviews were [then] coded by the research assistant, then reviewed by the project coordinator for completeness and accuracy of coding.” (199) 3

Another approach to corroboration of one's analysis is called “respondent validation” in which the researcher presents his/her initial analysis to research participants. The purpose is not specifically to have the participants agree that this is the account they would have given, but rather to recognize themselves, their words and ideas, and to understand and accept the researchers' analysis. This has been found by some researchers to be both a respectful and a valuable approach, leading to improvements in the ultimate data analysis. Nevertheless, limitations of the approach have been noted as well 9 , including participant lack of interest in such exercises, lack of agreement among participants about the validity or recognizability of the analysis, temptation of the researcher to alter his/her analysis based on negative, emotional reactions of the participants to the researcher's view, and, perhaps most important, the implication that the participants' analysis is more valid than the researcher's.

The final arbiter of the validity of the research, however, is ultimately the reader. The question thus reappears: Without access to known statistical methods, how can a reader judge the quality of the analysis presented? There are, in fact, an increasing number of ideas being promulgated about how the validity and reliability of qualitative research can be judged. One of the most interesting appeared in a recent article by Walter et al. 10 in the form of a table which pulls together in considerable detail, all the questions one might, as a reader, want to “ask” of any qualitative study. This includes – as covered in this editorial – how the sample was selected, data collected, and analysis performed. There is one crucial element in this table that is worth particular highlighting. Called “justification of data interpretation,” it concerns whether sufficient data have been presented to support the descriptive findings. And by “data,” what is meant is the words of participants themselves. This point cannot be stressed enough. It is the words of the participants that constitute the data from qualitative interviews. Thus, the researcher must convince the reader of two things. The first is that the data presented in support of the analysis are truly representative. This is a fairly technical matter, although one often addressed inadequately. Thus, quotes should be numbered and identified, and the reader should be told how and why these were selected from the original sample. In support of the representativeness of the quotes presented, negative, unusual or contradictory cases may also be discussed. The second issue is less technical but of equal importance. Does the researcher provide a full discussion of how s/he discovered and built the analysis? This is an absolutely key part of convincing the reader of the validity of one's qualitative research and yet, paradoxically, the conventions of quantitative research reporting – which separate Results sections from Discussion sections – actually make it more difficult to create the trail of analysis and fully expound upon it.

Qualitative research uses skills and methods which are unfamiliar to many science readers. Therefore, checklists of the sort mentioned above have value in helping to judge whether the researcher has done a solid and creditable job. However, none of them can tell the reader if the analysis is useful, insightful, or even inspired; to know that, one must read the work itself. Qualitative methods have the power to investigate questions that quantitative methods can neither pose nor illuminate in the same way. The work of Geller et al. in this issue is an example of this. Other work which I would strongly recommend in order to comprehend the value of qualitative research includes Mathews, et al.'s 11 study of rural, African-American breast cancer patients and how they come to terms with the diagnosis of breast cancer. Through a detailed analysis of these women's narratives, this work goes further toward explaining the phenomenon of late diagnosis of breast cancer among this population than multiple studies with impressive p values. Similarly, Hunt et al 12 provide a window into the issue of patient ‘noncompliance’ by creating an analytical framework for contrasting patient and provider goals, strategies, and evaluation criteria in chronic illness management, using examples from research on type 2 diabetes care. Work of this caliber does not merely provide hypotheses for later study. Rather, at its very best, qualitative research can do something that, for me, quantitative studies almost never do, and that is yield an aha! moment that lets you know you have just learned something truly new.

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Press, N. Qualitative research: Thoughts on how to do it; how to judge it; when to use it. Genet Med 7 , 155–158 (2005). https://doi.org/10.1097/00125817-200503000-00001

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Qualitative research methods: when to use them and how to judge them

Research output : Contribution to journal › Article › peer-review

Original language	English
Pages (from-to)	498-501
Number of pages	4
Journal
Volume	31
Issue number	3
DOIs
Publication status	Published - 1 Mar 2016

Access to Document

10.1093/humrep/dev334

Chapter 1. Introduction

“Science is in danger, and for that reason it is becoming dangerous” -Pierre Bourdieu, Science of Science and Reflexivity

Why an Open Access Textbook on Qualitative Research Methods?

I have been teaching qualitative research methods to both undergraduates and graduate students for many years. Although there are some excellent textbooks out there, they are often costly, and none of them, to my mind, properly introduces qualitative research methods to the beginning student (whether undergraduate or graduate student). In contrast, this open-access textbook is designed as a (free) true introduction to the subject, with helpful, practical pointers on how to conduct research and how to access more advanced instruction.

Textbooks are typically arranged in one of two ways: (1) by technique (each chapter covers one method used in qualitative research); or (2) by process (chapters advance from research design through publication). But both of these approaches are necessary for the beginner student. This textbook will have sections dedicated to the process as well as the techniques of qualitative research. This is a true “comprehensive” book for the beginning student. In addition to covering techniques of data collection and data analysis, it provides a road map of how to get started and how to keep going and where to go for advanced instruction. It covers aspects of research design and research communication as well as methods employed. Along the way, it includes examples from many different disciplines in the social sciences.

The primary goal has been to create a useful, accessible, engaging textbook for use across many disciplines. And, let’s face it. Textbooks can be boring. I hope readers find this to be a little different. I have tried to write in a practical and forthright manner, with many lively examples and references to good and intellectually creative qualitative research. Woven throughout the text are short textual asides (in colored textboxes) by professional (academic) qualitative researchers in various disciplines. These short accounts by practitioners should help inspire students. So, let’s begin!

What is Research?

When we use the word research , what exactly do we mean by that? This is one of those words that everyone thinks they understand, but it is worth beginning this textbook with a short explanation. We use the term to refer to “empirical research,” which is actually a historically specific approach to understanding the world around us. Think about how you know things about the world. [1] You might know your mother loves you because she’s told you she does. Or because that is what “mothers” do by tradition. Or you might know because you’ve looked for evidence that she does, like taking care of you when you are sick or reading to you in bed or working two jobs so you can have the things you need to do OK in life. Maybe it seems churlish to look for evidence; you just take it “on faith” that you are loved.

Only one of the above comes close to what we mean by research. Empirical research is research (investigation) based on evidence. Conclusions can then be drawn from observable data. This observable data can also be “tested” or checked. If the data cannot be tested, that is a good indication that we are not doing research. Note that we can never “prove” conclusively, through observable data, that our mothers love us. We might have some “disconfirming evidence” (that time she didn’t show up to your graduation, for example) that could push you to question an original hypothesis , but no amount of “confirming evidence” will ever allow us to say with 100% certainty, “my mother loves me.” Faith and tradition and authority work differently. Our knowledge can be 100% certain using each of those alternative methods of knowledge, but our certainty in those cases will not be based on facts or evidence.

For many periods of history, those in power have been nervous about “science” because it uses evidence and facts as the primary source of understanding the world, and facts can be at odds with what power or authority or tradition want you to believe. That is why I say that scientific empirical research is a historically specific approach to understand the world. You are in college or university now partly to learn how to engage in this historically specific approach.

In the sixteenth and seventeenth centuries in Europe, there was a newfound respect for empirical research, some of which was seriously challenging to the established church. Using observations and testing them, scientists found that the earth was not at the center of the universe, for example, but rather that it was but one planet of many which circled the sun. [2] For the next two centuries, the science of astronomy, physics, biology, and chemistry emerged and became disciplines taught in universities. All used the scientific method of observation and testing to advance knowledge. Knowledge about people , however, and social institutions, however, was still left to faith, tradition, and authority. Historians and philosophers and poets wrote about the human condition, but none of them used research to do so. [3]

It was not until the nineteenth century that “social science” really emerged, using the scientific method (empirical observation) to understand people and social institutions. New fields of sociology, economics, political science, and anthropology emerged. The first sociologists, people like Auguste Comte and Karl Marx, sought specifically to apply the scientific method of research to understand society, Engels famously claiming that Marx had done for the social world what Darwin did for the natural world, tracings its laws of development. Today we tend to take for granted the naturalness of science here, but it is actually a pretty recent and radical development.

To return to the question, “does your mother love you?” Well, this is actually not really how a researcher would frame the question, as it is too specific to your case. It doesn’t tell us much about the world at large, even if it does tell us something about you and your relationship with your mother. A social science researcher might ask, “do mothers love their children?” Or maybe they would be more interested in how this loving relationship might change over time (e.g., “do mothers love their children more now than they did in the 18th century when so many children died before reaching adulthood?”) or perhaps they might be interested in measuring quality of love across cultures or time periods, or even establishing “what love looks like” using the mother/child relationship as a site of exploration. All of these make good research questions because we can use observable data to answer them.

What is Qualitative Research?

“All we know is how to learn. How to study, how to listen, how to talk, how to tell. If we don’t tell the world, we don’t know the world. We’re lost in it, we die.” -Ursula LeGuin, The Telling

At its simplest, qualitative research is research about the social world that does not use numbers in its analyses. All those who fear statistics can breathe a sigh of relief – there are no mathematical formulae or regression models in this book! But this definition is less about what qualitative research can be and more about what it is not. To be honest, any simple statement will fail to capture the power and depth of qualitative research. One way of contrasting qualitative research to quantitative research is to note that the focus of qualitative research is less about explaining and predicting relationships between variables and more about understanding the social world. To use our mother love example, the question about “what love looks like” is a good question for the qualitative researcher while all questions measuring love or comparing incidences of love (both of which require measurement) are good questions for quantitative researchers. Patton writes,

Qualitative data describe. They take us, as readers, into the time and place of the observation so that we know what it was like to have been there. They capture and communicate someone else’s experience of the world in his or her own words. Qualitative data tell a story. ( Patton 2002:47 )

Qualitative researchers are asking different questions about the world than their quantitative colleagues. Even when researchers are employed in “mixed methods” research ( both quantitative and qualitative), they are using different methods to address different questions of the study. I do a lot of research about first-generation and working-college college students. Where a quantitative researcher might ask, how many first-generation college students graduate from college within four years? Or does first-generation college status predict high student debt loads? A qualitative researcher might ask, how does the college experience differ for first-generation college students? What is it like to carry a lot of debt, and how does this impact the ability to complete college on time? Both sets of questions are important, but they can only be answered using specific tools tailored to those questions. For the former, you need large numbers to make adequate comparisons. For the latter, you need to talk to people, find out what they are thinking and feeling, and try to inhabit their shoes for a little while so you can make sense of their experiences and beliefs.

Examples of Qualitative Research

You have probably seen examples of qualitative research before, but you might not have paid particular attention to how they were produced or realized that the accounts you were reading were the result of hours, months, even years of research “in the field.” A good qualitative researcher will present the product of their hours of work in such a way that it seems natural, even obvious, to the reader. Because we are trying to convey what it is like answers, qualitative research is often presented as stories – stories about how people live their lives, go to work, raise their children, interact with one another. In some ways, this can seem like reading particularly insightful novels. But, unlike novels, there are very specific rules and guidelines that qualitative researchers follow to ensure that the “story” they are telling is accurate , a truthful rendition of what life is like for the people being studied. Most of this textbook will be spent conveying those rules and guidelines. Let’s take a look, first, however, at three examples of what the end product looks like. I have chosen these three examples to showcase very different approaches to qualitative research, and I will return to these five examples throughout the book. They were all published as whole books (not chapters or articles), and they are worth the long read, if you have the time. I will also provide some information on how these books came to be and the length of time it takes to get them into book version. It is important you know about this process, and the rest of this textbook will help explain why it takes so long to conduct good qualitative research!

Example 1 : The End Game (ethnography + interviews)

Corey Abramson is a sociologist who teaches at the University of Arizona. In 2015 he published The End Game: How Inequality Shapes our Final Years ( 2015 ). This book was based on the research he did for his dissertation at the University of California-Berkeley in 2012. Actually, the dissertation was completed in 2012 but the work that was produced that took several years. The dissertation was entitled, “This is How We Live, This is How We Die: Social Stratification, Aging, and Health in Urban America” ( 2012 ). You can see how the book version, which was written for a more general audience, has a more engaging sound to it, but that the dissertation version, which is what academic faculty read and evaluate, has a more descriptive title. You can read the title and know that this is a study about aging and health and that the focus is going to be inequality and that the context (place) is going to be “urban America.” It’s a study about “how” people do something – in this case, how they deal with aging and death. This is the very first sentence of the dissertation, “From our first breath in the hospital to the day we die, we live in a society characterized by unequal opportunities for maintaining health and taking care of ourselves when ill. These disparities reflect persistent racial, socio-economic, and gender-based inequalities and contribute to their persistence over time” ( 1 ). What follows is a truthful account of how that is so.

Cory Abramson spent three years conducting his research in four different urban neighborhoods. We call the type of research he conducted “comparative ethnographic” because he designed his study to compare groups of seniors as they went about their everyday business. It’s comparative because he is comparing different groups (based on race, class, gender) and ethnographic because he is studying the culture/way of life of a group. [4] He had an educated guess, rooted in what previous research had shown and what social theory would suggest, that people’s experiences of aging differ by race, class, and gender. So, he set up a research design that would allow him to observe differences. He chose two primarily middle-class (one was racially diverse and the other was predominantly White) and two primarily poor neighborhoods (one was racially diverse and the other was predominantly African American). He hung out in senior centers and other places seniors congregated, watched them as they took the bus to get prescriptions filled, sat in doctor’s offices with them, and listened to their conversations with each other. He also conducted more formal conversations, what we call in-depth interviews, with sixty seniors from each of the four neighborhoods. As with a lot of fieldwork , as he got closer to the people involved, he both expanded and deepened his reach –

By the end of the project, I expanded my pool of general observations to include various settings frequented by seniors: apartment building common rooms, doctors’ offices, emergency rooms, pharmacies, senior centers, bars, parks, corner stores, shopping centers, pool halls, hair salons, coffee shops, and discount stores. Over the course of the three years of fieldwork, I observed hundreds of elders, and developed close relationships with a number of them. ( 2012:10 )

When Abramson rewrote the dissertation for a general audience and published his book in 2015, it got a lot of attention. It is a beautifully written book and it provided insight into a common human experience that we surprisingly know very little about. It won the Outstanding Publication Award by the American Sociological Association Section on Aging and the Life Course and was featured in the New York Times . The book was about aging, and specifically how inequality shapes the aging process, but it was also about much more than that. It helped show how inequality affects people’s everyday lives. For example, by observing the difficulties the poor had in setting up appointments and getting to them using public transportation and then being made to wait to see a doctor, sometimes in standing-room-only situations, when they are unwell, and then being treated dismissively by hospital staff, Abramson allowed readers to feel the material reality of being poor in the US. Comparing these examples with seniors with adequate supplemental insurance who have the resources to hire car services or have others assist them in arranging care when they need it, jolts the reader to understand and appreciate the difference money makes in the lives and circumstances of us all, and in a way that is different than simply reading a statistic (“80% of the poor do not keep regular doctor’s appointments”) does. Qualitative research can reach into spaces and places that often go unexamined and then reports back to the rest of us what it is like in those spaces and places.

Example 2: Racing for Innocence (Interviews + Content Analysis + Fictional Stories)

Jennifer Pierce is a Professor of American Studies at the University of Minnesota. Trained as a sociologist, she has written a number of books about gender, race, and power. Her very first book, Gender Trials: Emotional Lives in Contemporary Law Firms, published in 1995, is a brilliant look at gender dynamics within two law firms. Pierce was a participant observer, working as a paralegal, and she observed how female lawyers and female paralegals struggled to obtain parity with their male colleagues.

Fifteen years later, she reexamined the context of the law firm to include an examination of racial dynamics, particularly how elite white men working in these spaces created and maintained a culture that made it difficult for both female attorneys and attorneys of color to thrive. Her book, Racing for Innocence: Whiteness, Gender, and the Backlash Against Affirmative Action , published in 2012, is an interesting and creative blending of interviews with attorneys, content analyses of popular films during this period, and fictional accounts of racial discrimination and sexual harassment. The law firm she chose to study had come under an affirmative action order and was in the process of implementing equitable policies and programs. She wanted to understand how recipients of white privilege (the elite white male attorneys) come to deny the role they play in reproducing inequality. Through interviews with attorneys who were present both before and during the affirmative action order, she creates a historical record of the “bad behavior” that necessitated new policies and procedures, but also, and more importantly , probed the participants ’ understanding of this behavior. It should come as no surprise that most (but not all) of the white male attorneys saw little need for change, and that almost everyone else had accounts that were different if not sometimes downright harrowing.

I’ve used Pierce’s book in my qualitative research methods courses as an example of an interesting blend of techniques and presentation styles. My students often have a very difficult time with the fictional accounts she includes. But they serve an important communicative purpose here. They are her attempts at presenting “both sides” to an objective reality – something happens (Pierce writes this something so it is very clear what it is), and the two participants to the thing that happened have very different understandings of what this means. By including these stories, Pierce presents one of her key findings – people remember things differently and these different memories tend to support their own ideological positions. I wonder what Pierce would have written had she studied the murder of George Floyd or the storming of the US Capitol on January 6 or any number of other historic events whose observers and participants record very different happenings.

This is not to say that qualitative researchers write fictional accounts. In fact, the use of fiction in our work remains controversial. When used, it must be clearly identified as a presentation device, as Pierce did. I include Racing for Innocence here as an example of the multiple uses of methods and techniques and the way that these work together to produce better understandings by us, the readers, of what Pierce studied. We readers come away with a better grasp of how and why advantaged people understate their own involvement in situations and structures that advantage them. This is normal human behavior , in other words. This case may have been about elite white men in law firms, but the general insights here can be transposed to other settings. Indeed, Pierce argues that more research needs to be done about the role elites play in the reproduction of inequality in the workplace in general.

Example 3: Amplified Advantage (Mixed Methods: Survey Interviews + Focus Groups + Archives)

The final example comes from my own work with college students, particularly the ways in which class background affects the experience of college and outcomes for graduates. I include it here as an example of mixed methods, and for the use of supplementary archival research. I’ve done a lot of research over the years on first-generation, low-income, and working-class college students. I am curious (and skeptical) about the possibility of social mobility today, particularly with the rising cost of college and growing inequality in general. As one of the few people in my family to go to college, I didn’t grow up with a lot of examples of what college was like or how to make the most of it. And when I entered graduate school, I realized with dismay that there were very few people like me there. I worried about becoming too different from my family and friends back home. And I wasn’t at all sure that I would ever be able to pay back the huge load of debt I was taking on. And so I wrote my dissertation and first two books about working-class college students. These books focused on experiences in college and the difficulties of navigating between family and school ( Hurst 2010a, 2012 ). But even after all that research, I kept coming back to wondering if working-class students who made it through college had an equal chance at finding good jobs and happy lives,

What happens to students after college? Do working-class students fare as well as their peers? I knew from my own experience that barriers continued through graduate school and beyond, and that my debtload was higher than that of my peers, constraining some of the choices I made when I graduated. To answer these questions, I designed a study of students attending small liberal arts colleges, the type of college that tried to equalize the experience of students by requiring all students to live on campus and offering small classes with lots of interaction with faculty. These private colleges tend to have more money and resources so they can provide financial aid to low-income students. They also attract some very wealthy students. Because they enroll students across the class spectrum, I would be able to draw comparisons. I ended up spending about four years collecting data, both a survey of more than 2000 students (which formed the basis for quantitative analyses) and qualitative data collection (interviews, focus groups, archival research, and participant observation). This is what we call a “mixed methods” approach because we use both quantitative and qualitative data. The survey gave me a large enough number of students that I could make comparisons of the how many kind, and to be able to say with some authority that there were in fact significant differences in experience and outcome by class (e.g., wealthier students earned more money and had little debt; working-class students often found jobs that were not in their chosen careers and were very affected by debt, upper-middle-class students were more likely to go to graduate school). But the survey analyses could not explain why these differences existed. For that, I needed to talk to people and ask them about their motivations and aspirations. I needed to understand their perceptions of the world, and it is very hard to do this through a survey.

By interviewing students and recent graduates, I was able to discern particular patterns and pathways through college and beyond. Specifically, I identified three versions of gameplay. Upper-middle-class students, whose parents were themselves professionals (academics, lawyers, managers of non-profits), saw college as the first stage of their education and took classes and declared majors that would prepare them for graduate school. They also spent a lot of time building their resumes, taking advantage of opportunities to help professors with their research, or study abroad. This helped them gain admission to highly-ranked graduate schools and interesting jobs in the public sector. In contrast, upper-class students, whose parents were wealthy and more likely to be engaged in business (as CEOs or other high-level directors), prioritized building social capital. They did this by joining fraternities and sororities and playing club sports. This helped them when they graduated as they called on friends and parents of friends to find them well-paying jobs. Finally, low-income, first-generation, and working-class students were often adrift. They took the classes that were recommended to them but without the knowledge of how to connect them to life beyond college. They spent time working and studying rather than partying or building their resumes. All three sets of students thought they were “doing college” the right way, the way that one was supposed to do college. But these three versions of gameplay led to distinct outcomes that advantaged some students over others. I titled my work “Amplified Advantage” to highlight this process.

These three examples, Cory Abramson’s The End Game , Jennifer Peirce’s Racing for Innocence, and my own Amplified Advantage, demonstrate the range of approaches and tools available to the qualitative researcher. They also help explain why qualitative research is so important. Numbers can tell us some things about the world, but they cannot get at the hearts and minds, motivations and beliefs of the people who make up the social worlds we inhabit. For that, we need tools that allow us to listen and make sense of what people tell us and show us. That is what good qualitative research offers us.

How Is This Book Organized?

This textbook is organized as a comprehensive introduction to the use of qualitative research methods. The first half covers general topics (e.g., approaches to qualitative research, ethics) and research design (necessary steps for building a successful qualitative research study). The second half reviews various data collection and data analysis techniques. Of course, building a successful qualitative research study requires some knowledge of data collection and data analysis so the chapters in the first half and the chapters in the second half should be read in conversation with each other. That said, each chapter can be read on its own for assistance with a particular narrow topic. In addition to the chapters, a helpful glossary can be found in the back of the book. Rummage around in the text as needed.

Chapter Descriptions

Chapter 2 provides an overview of the Research Design Process. How does one begin a study? What is an appropriate research question? How is the study to be done – with what methods ? Involving what people and sites? Although qualitative research studies can and often do change and develop over the course of data collection, it is important to have a good idea of what the aims and goals of your study are at the outset and a good plan of how to achieve those aims and goals. Chapter 2 provides a road map of the process.

Chapter 3 describes and explains various ways of knowing the (social) world. What is it possible for us to know about how other people think or why they behave the way they do? What does it mean to say something is a “fact” or that it is “well-known” and understood? Qualitative researchers are particularly interested in these questions because of the types of research questions we are interested in answering (the how questions rather than the how many questions of quantitative research). Qualitative researchers have adopted various epistemological approaches. Chapter 3 will explore these approaches, highlighting interpretivist approaches that acknowledge the subjective aspect of reality – in other words, reality and knowledge are not objective but rather influenced by (interpreted through) people.

Chapter 4 focuses on the practical matter of developing a research question and finding the right approach to data collection. In any given study (think of Cory Abramson’s study of aging, for example), there may be years of collected data, thousands of observations , hundreds of pages of notes to read and review and make sense of. If all you had was a general interest area (“aging”), it would be very difficult, nearly impossible, to make sense of all of that data. The research question provides a helpful lens to refine and clarify (and simplify) everything you find and collect. For that reason, it is important to pull out that lens (articulate the research question) before you get started. In the case of the aging study, Cory Abramson was interested in how inequalities affected understandings and responses to aging. It is for this reason he designed a study that would allow him to compare different groups of seniors (some middle-class, some poor). Inevitably, he saw much more in the three years in the field than what made it into his book (or dissertation), but he was able to narrow down the complexity of the social world to provide us with this rich account linked to the original research question. Developing a good research question is thus crucial to effective design and a successful outcome. Chapter 4 will provide pointers on how to do this. Chapter 4 also provides an overview of general approaches taken to doing qualitative research and various “traditions of inquiry.”

Chapter 5 explores sampling . After you have developed a research question and have a general idea of how you will collect data (Observations? Interviews?), how do you go about actually finding people and sites to study? Although there is no “correct number” of people to interview , the sample should follow the research question and research design. Unlike quantitative research, qualitative research involves nonprobability sampling. Chapter 5 explains why this is so and what qualities instead make a good sample for qualitative research.

Chapter 6 addresses the importance of reflexivity in qualitative research. Related to epistemological issues of how we know anything about the social world, qualitative researchers understand that we the researchers can never be truly neutral or outside the study we are conducting. As observers, we see things that make sense to us and may entirely miss what is either too obvious to note or too different to comprehend. As interviewers, as much as we would like to ask questions neutrally and remain in the background, interviews are a form of conversation, and the persons we interview are responding to us . Therefore, it is important to reflect upon our social positions and the knowledges and expectations we bring to our work and to work through any blind spots that we may have. Chapter 6 provides some examples of reflexivity in practice and exercises for thinking through one’s own biases.

Chapter 7 is a very important chapter and should not be overlooked. As a practical matter, it should also be read closely with chapters 6 and 8. Because qualitative researchers deal with people and the social world, it is imperative they develop and adhere to a strong ethical code for conducting research in a way that does not harm. There are legal requirements and guidelines for doing so (see chapter 8), but these requirements should not be considered synonymous with the ethical code required of us. Each researcher must constantly interrogate every aspect of their research, from research question to design to sample through analysis and presentation, to ensure that a minimum of harm (ideally, zero harm) is caused. Because each research project is unique, the standards of care for each study are unique. Part of being a professional researcher is carrying this code in one’s heart, being constantly attentive to what is required under particular circumstances. Chapter 7 provides various research scenarios and asks readers to weigh in on the suitability and appropriateness of the research. If done in a class setting, it will become obvious fairly quickly that there are often no absolutely correct answers, as different people find different aspects of the scenarios of greatest importance. Minimizing the harm in one area may require possible harm in another. Being attentive to all the ethical aspects of one’s research and making the best judgments one can, clearly and consciously, is an integral part of being a good researcher.

Chapter 8 , best to be read in conjunction with chapter 7, explains the role and importance of Institutional Review Boards (IRBs) . Under federal guidelines, an IRB is an appropriately constituted group that has been formally designated to review and monitor research involving human subjects . Every institution that receives funding from the federal government has an IRB. IRBs have the authority to approve, require modifications to (to secure approval), or disapprove research. This group review serves an important role in the protection of the rights and welfare of human research subjects. Chapter 8 reviews the history of IRBs and the work they do but also argues that IRBs’ review of qualitative research is often both over-inclusive and under-inclusive. Some aspects of qualitative research are not well understood by IRBs, given that they were developed to prevent abuses in biomedical research. Thus, it is important not to rely on IRBs to identify all the potential ethical issues that emerge in our research (see chapter 7).

Chapter 9 provides help for getting started on formulating a research question based on gaps in the pre-existing literature. Research is conducted as part of a community, even if particular studies are done by single individuals (or small teams). What any of us finds and reports back becomes part of a much larger body of knowledge. Thus, it is important that we look at the larger body of knowledge before we actually start our bit to see how we can best contribute. When I first began interviewing working-class college students, there was only one other similar study I could find, and it hadn’t been published (it was a dissertation of students from poor backgrounds). But there had been a lot published by professors who had grown up working class and made it through college despite the odds. These accounts by “working-class academics” became an important inspiration for my study and helped me frame the questions I asked the students I interviewed. Chapter 9 will provide some pointers on how to search for relevant literature and how to use this to refine your research question.

Chapter 10 serves as a bridge between the two parts of the textbook, by introducing techniques of data collection. Qualitative research is often characterized by the form of data collection – for example, an ethnographic study is one that employs primarily observational data collection for the purpose of documenting and presenting a particular culture or ethnos. Techniques can be effectively combined, depending on the research question and the aims and goals of the study. Chapter 10 provides a general overview of all the various techniques and how they can be combined.

The second part of the textbook moves into the doing part of qualitative research once the research question has been articulated and the study designed. Chapters 11 through 17 cover various data collection techniques and approaches. Chapters 18 and 19 provide a very simple overview of basic data analysis. Chapter 20 covers communication of the data to various audiences, and in various formats.

Chapter 11 begins our overview of data collection techniques with a focus on interviewing , the true heart of qualitative research. This technique can serve as the primary and exclusive form of data collection, or it can be used to supplement other forms (observation, archival). An interview is distinct from a survey, where questions are asked in a specific order and often with a range of predetermined responses available. Interviews can be conversational and unstructured or, more conventionally, semistructured , where a general set of interview questions “guides” the conversation. Chapter 11 covers the basics of interviews: how to create interview guides, how many people to interview, where to conduct the interview, what to watch out for (how to prepare against things going wrong), and how to get the most out of your interviews.

Chapter 12 covers an important variant of interviewing, the focus group. Focus groups are semistructured interviews with a group of people moderated by a facilitator (the researcher or researcher’s assistant). Focus groups explicitly use group interaction to assist in the data collection. They are best used to collect data on a specific topic that is non-personal and shared among the group. For example, asking a group of college students about a common experience such as taking classes by remote delivery during the pandemic year of 2020. Chapter 12 covers the basics of focus groups: when to use them, how to create interview guides for them, and how to run them effectively.

Chapter 13 moves away from interviewing to the second major form of data collection unique to qualitative researchers – observation . Qualitative research that employs observation can best be understood as falling on a continuum of “fly on the wall” observation (e.g., observing how strangers interact in a doctor’s waiting room) to “participant” observation, where the researcher is also an active participant of the activity being observed. For example, an activist in the Black Lives Matter movement might want to study the movement, using her inside position to gain access to observe key meetings and interactions. Chapter 13 covers the basics of participant observation studies: advantages and disadvantages, gaining access, ethical concerns related to insider/outsider status and entanglement, and recording techniques.

Chapter 14 takes a closer look at “deep ethnography” – immersion in the field of a particularly long duration for the purpose of gaining a deeper understanding and appreciation of a particular culture or social world. Clifford Geertz called this “deep hanging out.” Whereas participant observation is often combined with semistructured interview techniques, deep ethnography’s commitment to “living the life” or experiencing the situation as it really is demands more conversational and natural interactions with people. These interactions and conversations may take place over months or even years. As can be expected, there are some costs to this technique, as well as some very large rewards when done competently. Chapter 14 provides some examples of deep ethnographies that will inspire some beginning researchers and intimidate others.

Chapter 15 moves in the opposite direction of deep ethnography, a technique that is the least positivist of all those discussed here, to mixed methods , a set of techniques that is arguably the most positivist . A mixed methods approach combines both qualitative data collection and quantitative data collection, commonly by combining a survey that is analyzed statistically (e.g., cross-tabs or regression analyses of large number probability samples) with semi-structured interviews. Although it is somewhat unconventional to discuss mixed methods in textbooks on qualitative research, I think it is important to recognize this often-employed approach here. There are several advantages and some disadvantages to taking this route. Chapter 16 will describe those advantages and disadvantages and provide some particular guidance on how to design a mixed methods study for maximum effectiveness.

Chapter 16 covers data collection that does not involve live human subjects at all – archival and historical research (chapter 17 will also cover data that does not involve interacting with human subjects). Sometimes people are unavailable to us, either because they do not wish to be interviewed or observed (as is the case with many “elites”) or because they are too far away, in both place and time. Fortunately, humans leave many traces and we can often answer questions we have by examining those traces. Special collections and archives can be goldmines for social science research. This chapter will explain how to access these places, for what purposes, and how to begin to make sense of what you find.

Chapter 17 covers another data collection area that does not involve face-to-face interaction with humans: content analysis . Although content analysis may be understood more properly as a data analysis technique, the term is often used for the entire approach, which will be the case here. Content analysis involves interpreting meaning from a body of text. This body of text might be something found in historical records (see chapter 16) or something collected by the researcher, as in the case of comment posts on a popular blog post. I once used the stories told by student loan debtors on the website studentloanjustice.org as the content I analyzed. Content analysis is particularly useful when attempting to define and understand prevalent stories or communication about a topic of interest. In other words, when we are less interested in what particular people (our defined sample) are doing or believing and more interested in what general narratives exist about a particular topic or issue. This chapter will explore different approaches to content analysis and provide helpful tips on how to collect data, how to turn that data into codes for analysis, and how to go about presenting what is found through analysis.

Where chapter 17 has pushed us towards data analysis, chapters 18 and 19 are all about what to do with the data collected, whether that data be in the form of interview transcripts or fieldnotes from observations. Chapter 18 introduces the basics of coding , the iterative process of assigning meaning to the data in order to both simplify and identify patterns. What is a code and how does it work? What are the different ways of coding data, and when should you use them? What is a codebook, and why do you need one? What does the process of data analysis look like?

Chapter 19 goes further into detail on codes and how to use them, particularly the later stages of coding in which our codes are refined, simplified, combined, and organized. These later rounds of coding are essential to getting the most out of the data we’ve collected. As students are often overwhelmed with the amount of data (a corpus of interview transcripts typically runs into the hundreds of pages; fieldnotes can easily top that), this chapter will also address time management and provide suggestions for dealing with chaos and reminders that feeling overwhelmed at the analysis stage is part of the process. By the end of the chapter, you should understand how “findings” are actually found.

The book concludes with a chapter dedicated to the effective presentation of data results. Chapter 20 covers the many ways that researchers communicate their studies to various audiences (academic, personal, political), what elements must be included in these various publications, and the hallmarks of excellent qualitative research that various audiences will be expecting. Because qualitative researchers are motivated by understanding and conveying meaning , effective communication is not only an essential skill but a fundamental facet of the entire research project. Ethnographers must be able to convey a certain sense of verisimilitude , the appearance of true reality. Those employing interviews must faithfully depict the key meanings of the people they interviewed in a way that rings true to those people, even if the end result surprises them. And all researchers must strive for clarity in their publications so that various audiences can understand what was found and why it is important.

The book concludes with a short chapter ( chapter 21 ) discussing the value of qualitative research. At the very end of this book, you will find a glossary of terms. I recommend you make frequent use of the glossary and add to each entry as you find examples. Although the entries are meant to be simple and clear, you may also want to paraphrase the definition—make it “make sense” to you, in other words. In addition to the standard reference list (all works cited here), you will find various recommendations for further reading at the end of many chapters. Some of these recommendations will be examples of excellent qualitative research, indicated with an asterisk (*) at the end of the entry. As they say, a picture is worth a thousand words. A good example of qualitative research can teach you more about conducting research than any textbook can (this one included). I highly recommend you select one to three examples from these lists and read them along with the textbook.

A final note on the choice of examples – you will note that many of the examples used in the text come from research on college students. This is for two reasons. First, as most of my research falls in this area, I am most familiar with this literature and have contacts with those who do research here and can call upon them to share their stories with you. Second, and more importantly, my hope is that this textbook reaches a wide audience of beginning researchers who study widely and deeply across the range of what can be known about the social world (from marine resources management to public policy to nursing to political science to sexuality studies and beyond). It is sometimes difficult to find examples that speak to all those research interests, however. A focus on college students is something that all readers can understand and, hopefully, appreciate, as we are all now or have been at some point a college student.

Patton’s Ten Suggestions for Doing Qualitative Research

The following ten suggestions were made by Michael Quinn Patton in his massive textbooks Qualitative Research and Evaluations Methods . This book is highly recommended for those of you who want more than an introduction to qualitative methods. It is the book I relied on heavily when I was a graduate student, although it is much easier to “dip into” when necessary than to read through as a whole. Patton is asked for “just one bit of advice” for a graduate student considering using qualitative research methods for their dissertation. Here are his top ten responses, in short form, heavily paraphrased, and with additional comments and emphases from me:

Make sure that a qualitative approach fits the research question. The following are the kinds of questions that call out for qualitative methods or where qualitative methods are particularly appropriate: questions about people’s experiences or how they make sense of those experiences; studying a person in their natural environment; researching a phenomenon so unknown that it would be impossible to study it with standardized instruments or other forms of quantitative data collection.
Study qualitative research by going to the original sources for the design and analysis appropriate to the particular approach you want to take (e.g., read Glaser and Straus if you are using grounded theory )
Find a dissertation adviser who understands or at least who will support your use of qualitative research methods. You are asking for trouble if your entire committee is populated by quantitative researchers, even if they are all very knowledgeable about the subject or focus of your study (maybe even more so if they are!)
Really work on design. Doing qualitative research effectively takes a lot of planning. Even if things are more flexible than in quantitative research, a good design is absolutely essential when starting out.
Practice data collection techniques, particularly interviewing and observing. There is definitely a set of learned skills here! Do not expect your first interview to be perfect. You will continue to grow as a researcher the more interviews you conduct, and you will probably come to understand yourself a bit more in the process, too. This is not easy, despite what others who don’t work with qualitative methods may assume (and tell you!)
Have a plan for analysis before you begin data collection. This is often a requirement in IRB protocols , although you can get away with writing something fairly simple. And even if you are taking an approach, such as grounded theory, that pushes you to remain fairly open-minded during the data collection process, you still want to know what you will be doing with all the data collected – creating a codebook? Writing analytical memos? Comparing cases? Having a plan in hand will also help prevent you from collecting too much extraneous data.
Be prepared to confront controversies both within the qualitative research community and between qualitative research and quantitative research. Don’t be naïve about this – qualitative research, particularly some approaches, will be derided by many more “positivist” researchers and audiences. For example, is an “n” of 1 really sufficient? Yes! But not everyone will agree.
Do not make the mistake of using qualitative research methods because someone told you it was easier, or because you are intimidated by the math required of statistical analyses. Qualitative research is difficult in its own way (and many would claim much more time-consuming than quantitative research). Do it because you are convinced it is right for your goals, aims, and research questions.
Find a good support network. This could be a research mentor, or it could be a group of friends or colleagues who are also using qualitative research, or it could be just someone who will listen to you work through all of the issues you will confront out in the field and during the writing process. Even though qualitative research often involves human subjects, it can be pretty lonely. A lot of times you will feel like you are working without a net. You have to create one for yourself. Take care of yourself.
And, finally, in the words of Patton, “Prepare to be changed. Looking deeply at other people’s lives will force you to look deeply at yourself.”
We will actually spend an entire chapter ( chapter 3 ) looking at this question in much more detail! ↵
Note that this might have been news to Europeans at the time, but many other societies around the world had also come to this conclusion through observation. There is often a tendency to equate “the scientific revolution” with the European world in which it took place, but this is somewhat misleading. ↵
Historians are a special case here. Historians have scrupulously and rigorously investigated the social world, but not for the purpose of understanding general laws about how things work, which is the point of scientific empirical research. History is often referred to as an idiographic field of study, meaning that it studies things that happened or are happening in themselves and not for general observations or conclusions. ↵
Don’t worry, we’ll spend more time later in this book unpacking the meaning of ethnography and other terms that are important here. Note the available glossary ↵

An approach to research that is “multimethod in focus, involving an interpretative, naturalistic approach to its subject matter. This means that qualitative researchers study things in their natural settings, attempting to make sense of, or interpret, phenomena in terms of the meanings people bring to them. Qualitative research involves the studied use and collection of a variety of empirical materials – case study, personal experience, introspective, life story, interview, observational, historical, interactional, and visual texts – that describe routine and problematic moments and meanings in individuals’ lives." ( Denzin and Lincoln 2005:2 ). Contrast with quantitative research .

In contrast to methodology, methods are more simply the practices and tools used to collect and analyze data. Examples of common methods in qualitative research are interviews , observations , and documentary analysis . One’s methodology should connect to one’s choice of methods, of course, but they are distinguishable terms. See also methodology .

A proposed explanation for an observation, phenomenon, or scientific problem that can be tested by further investigation. The positing of a hypothesis is often the first step in quantitative research but not in qualitative research. Even when qualitative researchers offer possible explanations in advance of conducting research, they will tend to not use the word “hypothesis” as it conjures up the kind of positivist research they are not conducting.

The foundational question to be addressed by the research study. This will form the anchor of the research design, collection, and analysis. Note that in qualitative research, the research question may, and probably will, alter or develop during the course of the research.

An approach to research that collects and analyzes numerical data for the purpose of finding patterns and averages, making predictions, testing causal relationships, and generalizing results to wider populations. Contrast with qualitative research .

Data collection that takes place in real-world settings, referred to as “the field;” a key component of much Grounded Theory and ethnographic research. Patton ( 2002 ) calls fieldwork “the central activity of qualitative inquiry” where “‘going into the field’ means having direct and personal contact with people under study in their own environments – getting close to people and situations being studied to personally understand the realities of minutiae of daily life” (48).

The people who are the subjects of a qualitative study. In interview-based studies, they may be the respondents to the interviewer; for purposes of IRBs, they are often referred to as the human subjects of the research.

The branch of philosophy concerned with knowledge. For researchers, it is important to recognize and adopt one of the many distinguishing epistemological perspectives as part of our understanding of what questions research can address or fully answer. See, e.g., constructivism , subjectivism, and objectivism .

An approach that refutes the possibility of neutrality in social science research. All research is “guided by a set of beliefs and feelings about the world and how it should be understood and studied” (Denzin and Lincoln 2005: 13). In contrast to positivism , interpretivism recognizes the social constructedness of reality, and researchers adopting this approach focus on capturing interpretations and understandings people have about the world rather than “the world” as it is (which is a chimera).

The cluster of data-collection tools and techniques that involve observing interactions between people, the behaviors, and practices of individuals (sometimes in contrast to what they say about how they act and behave), and cultures in context. Observational methods are the key tools employed by ethnographers and Grounded Theory .

Research based on data collected and analyzed by the research (in contrast to secondary “library” research).

The process of selecting people or other units of analysis to represent a larger population. In quantitative research, this representation is taken quite literally, as statistically representative. In qualitative research, in contrast, sample selection is often made based on potential to generate insight about a particular topic or phenomenon.

A method of data collection in which the researcher asks the participant questions; the answers to these questions are often recorded and transcribed verbatim. There are many different kinds of interviews - see also semistructured interview , structured interview , and unstructured interview .

The specific group of individuals that you will collect data from. Contrast population.

The practice of being conscious of and reflective upon one’s own social location and presence when conducting research. Because qualitative research often requires interaction with live humans, failing to take into account how one’s presence and prior expectations and social location affect the data collected and how analyzed may limit the reliability of the findings. This remains true even when dealing with historical archives and other content. Who we are matters when asking questions about how people experience the world because we, too, are a part of that world.

The science and practice of right conduct; in research, it is also the delineation of moral obligations towards research participants, communities to which we belong, and communities in which we conduct our research.

An administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated. The IRB is charged with the responsibility of reviewing all research involving human participants. The IRB is concerned with protecting the welfare, rights, and privacy of human subjects. The IRB has the authority to approve, disapprove, monitor, and require modifications in all research activities that fall within its jurisdiction as specified by both the federal regulations and institutional policy.

Research, according to US federal guidelines, that involves “a living individual about whom an investigator (whether professional or student) conducting research: (1) Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens; or (2) Obtains, uses, studies, analyzes, or generates identifiable private information or identifiable biospecimens.”

One of the primary methodological traditions of inquiry in qualitative research, ethnography is the study of a group or group culture, largely through observational fieldwork supplemented by interviews. It is a form of fieldwork that may include participant-observation data collection. See chapter 14 for a discussion of deep ethnography.

A form of interview that follows a standard guide of questions asked, although the order of the questions may change to match the particular needs of each individual interview subject, and probing “follow-up” questions are often added during the course of the interview. The semi-structured interview is the primary form of interviewing used by qualitative researchers in the social sciences. It is sometimes referred to as an “in-depth” interview. See also interview and interview guide .

A method of observational data collection taking place in a natural setting; a form of fieldwork . The term encompasses a continuum of relative participation by the researcher (from full participant to “fly-on-the-wall” observer). This is also sometimes referred to as ethnography , although the latter is characterized by a greater focus on the culture under observation.

A research design that employs both quantitative and qualitative methods, as in the case of a survey supplemented by interviews.

An epistemological perspective that posits the existence of reality through sensory experience similar to empiricism but goes further in denying any non-sensory basis of thought or consciousness. In the social sciences, the term has roots in the proto-sociologist August Comte, who believed he could discern “laws” of society similar to the laws of natural science (e.g., gravity). The term has come to mean the kinds of measurable and verifiable science conducted by quantitative researchers and is thus used pejoratively by some qualitative researchers interested in interpretation, consciousness, and human understanding. Calling someone a “positivist” is often intended as an insult. See also empiricism and objectivism.

A place or collection containing records, documents, or other materials of historical interest; most universities have an archive of material related to the university’s history, as well as other “special collections” that may be of interest to members of the community.

A method of both data collection and data analysis in which a given content (textual, visual, graphic) is examined systematically and rigorously to identify meanings, themes, patterns and assumptions. Qualitative content analysis (QCA) is concerned with gathering and interpreting an existing body of material.

A word or short phrase that symbolically assigns a summative, salient, essence-capturing, and/or evocative attribute for a portion of language-based or visual data (Saldaña 2021:5).

Usually a verbatim written record of an interview or focus group discussion.

The primary form of data for fieldwork , participant observation , and ethnography . These notes, taken by the researcher either during the course of fieldwork or at day’s end, should include as many details as possible on what was observed and what was said. They should include clear identifiers of date, time, setting, and names (or identifying characteristics) of participants.

The process of labeling and organizing qualitative data to identify different themes and the relationships between them; a way of simplifying data to allow better management and retrieval of key themes and illustrative passages. See coding frame and codebook.

A methodological tradition of inquiry and approach to analyzing qualitative data in which theories emerge from a rigorous and systematic process of induction. This approach was pioneered by the sociologists Glaser and Strauss (1967). The elements of theory generated from comparative analysis of data are, first, conceptual categories and their properties and, second, hypotheses or generalized relations among the categories and their properties – “The constant comparing of many groups draws the [researcher’s] attention to their many similarities and differences. Considering these leads [the researcher] to generate abstract categories and their properties, which, since they emerge from the data, will clearly be important to a theory explaining the kind of behavior under observation.” (36).

A detailed description of any proposed research that involves human subjects for review by IRB. The protocol serves as the recipe for the conduct of the research activity. It includes the scientific rationale to justify the conduct of the study, the information necessary to conduct the study, the plan for managing and analyzing the data, and a discussion of the research ethical issues relevant to the research. Protocols for qualitative research often include interview guides, all documents related to recruitment, informed consent forms, very clear guidelines on the safekeeping of materials collected, and plans for de-identifying transcripts or other data that include personal identifying information.

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How to use and assess qualitative research methods

Affiliations.

1 Department of Neurology, Heidelberg University Hospital, Im Neuenheimer Feld 400, 69120 Heidelberg, Germany.
2 Clinical Cooperation Unit Neuro-Oncology, German Cancer Research Center, Heidelberg, Germany.
PMID: 33324920
PMCID: PMC7650082
DOI: 10.1186/s42466-020-00059-z

This paper aims to provide an overview of the use and assessment of qualitative research methods in the health sciences. Qualitative research can be defined as the study of the nature of phenomena and is especially appropriate for answering questions of why something is (not) observed, assessing complex multi-component interventions, and focussing on intervention improvement. The most common methods of data collection are document study, (non-) participant observations, semi-structured interviews and focus groups. For data analysis, field-notes and audio-recordings are transcribed into protocols and transcripts, and coded using qualitative data management software. Criteria such as checklists, reflexivity, sampling strategies, piloting, co-coding, member-checking and stakeholder involvement can be used to enhance and assess the quality of the research conducted. Using qualitative in addition to quantitative designs will equip us with better tools to address a greater range of research problems, and to fill in blind spots in current neurological research and practice.

Keywords: Mixed methods; Qualitative research; Quality assessment.

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Competing interestsThe authors declare no competing interests.

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Qualitative research methods: when to use them and how to judge them

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Lincoln, Yvonna, and Egon Guba, "Postpositivism and the Naturalist Paradigm," pp. 14-46 in Yvonna Lincoln and Egon Guba, Naturalistic Inquiry . Beverly Hills, CA: Sage, 1985.*

Key mechanisms by which post-icu activities can improve in-icu care: results of the international thrive collaboratives., counselling help-seeking behaviour among male students in a higher learning ecology, ‘it's a bit too much fathering this seed’: the meaning-making of the sperm donor in italian lesbian mother families, health care experiences among women diagnosed with gestational breast cancer., quality in qualitative research., saviours and satyrs: ambivalence in narrative meanings of sperm provision, investigation of staff and patients’ opinions of a proposed trial of elective single embryo transfer, beyond sperm cells: a qualitative study on constructed meanings of the sperm donor in lesbian families, related papers (5), using thematic analysis in psychology, thematic analysis: striving to meet the trustworthiness criteria, how many interviews are enough: an experiment with data saturation and variability, strategies for ensuring trustworthiness in qualitative research projects, case study research: design and methods, trending questions (1).

Both qualitative and quantitative research are scientific methods in psychology as they offer unique insights into human behavior, complementing each other to provide a comprehensive understanding of psychological phenomena.

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v.34(5 Pt 2); 1999 Dec

Qualitative methods: what are they and why use them?

OBJECTIVE: To provide an overview of reasons why qualitative methods have been used and can be used in health services and health policy research, to describe a range of specific methods, and to give examples of their application. DATA SOURCES: Classic and contemporary descriptions of the underpinnings and applications of qualitative research methods and studies that have used such methods to examine important health services and health policy issues. PRINCIPAL FINDINGS: Qualitative research methods are valuable in providing rich descriptions of complex phenomena; tracking unique or unexpected events; illuminating the experience and interpretation of events by actors with widely differing stakes and roles; giving voice to those whose views are rarely heard; conducting initial explorations to develop theories and to generate and even test hypotheses; and moving toward explanations. Qualitative and quantitative methods can be complementary, used in sequence or in tandem. The best qualitative research is systematic and rigorous, and it seeks to reduce bias and error and to identify evidence that disconfirms initial or emergent hypotheses. CONCLUSIONS: Qualitative methods have much to contribute to health services and health policy research, especially as such research deals with rapid change and develops a more fully integrated theory base and research agenda. However, the field must build on the best traditions and techniques of qualitative methods and must recognize that special training and experience are essential to the application of these methods.

Full text is available as a scanned copy of the original print version. Get a printable copy (PDF file) of the complete article (1.8M), or click on a page image below to browse page by page. Links to PubMed are also available for Selected References .

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Luft HS. Health services research as a scientific process: the metamorphosis of an empirical research project from grant proposal to final report. Health Serv Res. 1986 Oct; 21 (4):563–584. [ PMC free article ] [ PubMed ] [ Google Scholar ]

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Qualitative research examples: How to unlock, rich, descriptive insights

User Research

Aug 19, 2024 • 17 minutes read

Qualitative research examples: How to unlock, rich, descriptive insights

Qualitative research uncovers in-depth user insights, but what does it look like? Here are seven methods and examples to help you get the data you need.

Armin Tanovic

Behind every what, there’s a why . Qualitative research is how you uncover that why. It enables you to connect with users and understand their thoughts, feelings, wants, needs, and pain points.

There’s many methods for conducting qualitative research, and many objectives it can help you pursue—you might want to explore ways to improve NPS scores, combat reduced customer retention, or understand (and recreate) the success behind a well-received product. The common thread? All these metrics impact your business, and qualitative research can help investigate and improve that impact.

In this article, we’ll take you through seven methods and examples of qualitative research, including when and how to use them.

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qualitative research methods when to use them and how to judge them

7 Qualitative research methods: An overview

There are various qualitative UX research methods that can help you get in-depth, descriptive insights. Some are suited to specific phases of the design and development process, while others are more task-oriented.

Here’s our overview of the most common qualitative research methods. Keep reading for their use cases, and detailed examples of how to conduct them.

Method
User interviews
Focus groups
Ethnographic research
Qualitative observation
Case study research
Secondary research
Open-ended surveys			to extract descriptive insights.

1. User interviews

A user interview is a one-on-one conversation between a UX researcher, designer or Product Manager and a target user to understand their thoughts, perspectives, and feelings on a product or service. User interviews are a great way to get non-numerical data on individual experiences with your product, to gain a deeper understanding of user perspectives.

Interviews can be structured, semi-structured, or unstructured . Structured interviews follow a strict interview script and can help you get answers to your planned questions, while semi and unstructured interviews are less rigid in their approach and typically lead to more spontaneous, user-centered insights.

When to use user interviews

Interviews are ideal when you want to gain an in-depth understanding of your users’ perspectives on your product or service, and why they feel a certain way.

Interviews can be used at any stage in the product design and development process, being particularly helpful during:

The discovery phase: To better understand user needs, problems, and the context in which they use your product—revealing the best potential solutions
The design phase: To get contextual feedback on mockups, wireframes, and prototypes, helping you pinpoint issues and the reasons behind them
Post-launch: To assess if your product continues to meet users’ shifting expectations and understand why or why not

How to conduct user interviews: The basics

Draft questions based on your research objectives
Recruit relevant research participants and schedule interviews
Conduct the interview and transcribe responses
Analyze the interview responses to extract insights
Use your findings to inform design, product, and business decisions

💡 A specialized user interview tool makes interviewing easier. With Maze Interview Studies , you can recruit, host, and analyze interviews all on one platform.

User interviews: A qualitative research example

Let’s say you’ve designed a recruitment platform, called Tech2Talent , that connects employers with tech talent. Before starting the design process, you want to clearly understand the pain points employers experience with existing recruitment tools'.

You draft a list of ten questions for a semi-structured interview for 15 different one-on-one interviews. As it’s semi-structured, you don’t expect to ask all the questions—the script serves as more of a guide.

One key question in your script is: “Have tech recruitment platforms helped you find the talent you need in the past?”

Most respondents answer with a resounding and passionate ‘no’ with one of them expanding:

“For our company, it’s been pretty hit or miss honestly. They let just about anyone make a profile and call themselves tech talent. It’s so hard sifting through serious candidates. I can’t see any of their achievements until I invest time setting up an interview.”

You begin to notice a pattern in your responses: recruitment tools often lack easily accessible details on talent profiles.

You’ve gained contextual feedback on why other recruitment platforms fail to solve user needs.

2. Focus groups

A focus group is a research method that involves gathering a small group of people—around five to ten users—to discuss a specific topic, such as their’ experience with your new product feature. Unlike user interviews, focus groups aim to capture the collective opinion of a wider market segment and encourage discussion among the group.

When to use focus groups

You should use focus groups when you need a deeper understanding of your users’ collective opinions. The dynamic discussion among participants can spark in-depth insights that might not emerge from regular interviews.

Focus groups can be used before, during, and after a product launch. They’re ideal:

Throughout the problem discovery phase: To understand your user segment’s pain points and expectations, and generate product ideas
Post-launch: To evaluate and understand the collective opinion of your product’s user experience
When conducting market research: To grasp usage patterns, consumer perceptions, and market opportunities for your product

How to conduct focus group studies: The basics

Draft prompts to spark conversation, or a series of questions based on your UX research objectives
Find a group of five to ten users who are representative of your target audience (or a specific user segment) and schedule your focus group session
Conduct the focus group by talking and listening to users, then transcribe responses
Analyze focus group responses and extract insights
Use your findings to inform design decisions

The number of participants can make it difficult to take notes or do manual transcriptions. We recommend using a transcription or a specialized UX research tool , such as Maze, that can automatically create ready-to-share reports and highlight key user insights.

Focus groups: A qualitative research example

You’re a UX researcher at FitMe , a fitness app that creates customized daily workouts for gym-goers. Unlike many other apps, FitMe takes into account the previous day’s workout and aims to create one that allows users to effectively rest different muscles.

However, FitMe has an issue. Users are generating workouts but not completing them. They’re accessing the app, taking the necessary steps to get a workout for the day, but quitting at the last hurdle.

Time to talk to users.

You organize a focus group to get to the root of the drop-off issue. You invite five existing users, all of whom have dropped off at the exact point you’re investigating, and ask them questions to uncover why.

A dialog develops:

Participant 1: “Sometimes I’ll get a workout that I just don’t want to do. Sure, it’s a good workout—but I just don’t want to physically do it. I just do my own thing when that happens.”

Participant 2: “Same here, some of them are so boring. I go to the gym because I love it. It’s an escape.”

Participant 3: “Right?! I get that the app generates the best one for me on that specific day, but I wish I could get a couple of options.”

Participant 4: “I’m the same, there are some exercises I just refuse to do. I’m not coming to the gym to do things I dislike.”

Conducting the focus groups and reviewing the transcripts, you realize that users want options. A workout that works for one gym-goer doesn’t necessarily work for the next.

A possible solution? Adding the option to generate a new workout (that still considers previous workouts)and the ability to blacklist certain exercises, like burpees.

3. Ethnographic research

Ethnographic research is a research method that involves observing and interacting with users in a real-life environment. By studying users in their natural habitat, you can understand how your product fits into their daily lives.

Ethnographic research can be active or passive. Active ethnographic research entails engaging with users in their natural environment and then following up with methods like interviews. Passive ethnographic research involves letting the user interact with the product while you note your observations.

When to use ethnographic research

Ethnographic research is best suited when you want rich insights into the context and environment in which users interact with your product. Keep in mind that you can conduct ethnographic research throughout the entire product design and development process —from problem discovery to post-launch. However, it’s mostly done early in the process:

Early concept development: To gain an understanding of your user's day-to-day environment. Observe how they complete tasks and the pain points they encounter. The unique demands of their everyday lives will inform how to design your product.
Initial design phase: Even if you have a firm grasp of the user’s environment, you still need to put your solution to the test. Conducting ethnographic research with your users interacting with your prototype puts theory into practice.

How to conduct ethnographic research:

Recruit users who are reflective of your audience
Meet with them in their natural environment, and tell them to behave as they usually would
Take down field notes as they interact with your product
Engage with your users, ask questions, or host an in-depth interview if you’re doing an active ethnographic study
Collect all your data and analyze it for insights

While ethnographic studies provide a comprehensive view of what potential users actually do, they are resource-intensive and logistically difficult. A common alternative is diary studies. Like ethnographic research, diary studies examine how users interact with your product in their day-to-day, but the data is self-reported by participants.

⚙️ Recruiting participants proving tough and time-consuming? Maze Panel makes it easy, with 400+ filters to find your ideal participants from a pool of 3 million participants.

Ethnographic research: A qualitative research example

You're a UX researcher for a project management platform called ProFlow , and you’re conducting an ethnographic study of the project creation process with key users, including a startup’s COO.

The first thing you notice is that the COO is rushing while navigating the platform. You also take note of the 46 tabs and Zoom calls opened on their monitor. Their attention is divided, and they let out an exasperated sigh as they repeatedly hit “refresh” on your website’s onboarding interface.

You conclude the session with an interview and ask, “How easy or difficult did you find using ProFlow to coordinate a project?”

The COO answers: “Look, the whole reason we turn to project platforms is because we need to be quick on our feet. I’m doing a million things so I need the process to be fast and simple. The actual project management is good, but creating projects and setting up tables is way too complicated.”

You realize that ProFlow ’s project creation process takes way too much time for professionals working in fast-paced, dynamic environments. To solve the issue, propose a quick-create option that enables them to move ahead with the basics instead of requiring in-depth project details.

4. Qualitative observation

Qualitative observation is a similar method to ethnographic research, though not as deep. It involves observing your users in a natural or controlled environment and taking notes as they interact with a product. However, be sure not to interrupt them, as this compromises the integrity of the study and turns it into active ethnographic research.

When to qualitative observation

Qualitative observation is best when you want to record how users interact with your product without anyone interfering. Much like ethnographic research, observation is best done during:

Early concept development: To help you understand your users' daily lives, how they complete tasks, and the problems they deal with. The observations you collect in these instances will help you define a concept for your product.
Initial design phase: Observing how users deal with your prototype helps you test if they can easily interact with it in their daily environments

How to conduct qualitative observation:

Recruit users who regularly use your product
Meet with users in either their natural environment, such as their office, or within a controlled environment, such as a lab
Observe them and take down field notes based on what you notice

Qualitative observation: An qualitative research example

You’re conducting UX research for Stackbuilder , an app that connects businesses with tools ideal for their needs and budgets. To determine if your app is easy to use for industry professionals, you decide to conduct an observation study.

Sitting in with the participant, you notice they breeze past the onboarding process, quickly creating an account for their company. Yet, after specifying their company’s budget, they suddenly slow down. They open links to each tool’s individual page, confusingly switching from one tab to another. They let out a sigh as they read through each website.

Conducting your observation study, you realize that users find it difficult to extract information from each tool’s website. Based on your field notes, you suggest including a bullet-point summary of each tool directly on your platform.

5. Case study research

Case studies are a UX research method that provides comprehensive and contextual insights into a real-world case over a long period of time. They typically include a range of other qualitative research methods, like interviews, observations, and ethnographic research. A case study allows you to form an in-depth analysis of how people use your product, helping you uncover nuanced differences between your users.

When to use case studies

Case studies are best when your product involves complex interactions that need to be tracked over a longer period or through in-depth analysis. You can also use case studies when your product is innovative, and there’s little existing data on how users interact with it.

As for specific phases in the product design and development process:

Initial design phase: Case studies can help you rigorously test for product issues and the reasons behind them, giving you in-depth feedback on everything between user motivations, friction points, and usability issues
Post-launch phase: Continuing with case studies after launch can give you ongoing feedback on how users interact with the product in their day-to-day lives. These insights ensure you can meet shifting user expectations with product updates and future iterations

How to conduct case studies:

Outline an objective for your case study such as examining specific user tasks or the overall user journey
Select qualitative research methods such as interviews, ethnographic studies, or observations
Collect and analyze your data for comprehensive insights
Include your findings in a report with proposed solutions

Case study research: A qualitative research example

Your team has recently launched Pulse , a platform that analyzes social media posts to identify rising digital marketing trends. Pulse has been on the market for a year, and you want to better understand how it helps small businesses create successful campaigns.

To conduct your case study, you begin with a series of interviews to understand user expectations, ethnographic research sessions, and focus groups. After sorting responses and observations into common themes you notice a main recurring pattern. Users have trouble interpreting the data from their dashboards, making it difficult to identify which trends to follow.

With your synthesized insights, you create a report with detailed narratives of individual user experiences, common themes and issues, and recommendations for addressing user friction points.

Some of your proposed solutions include creating intuitive graphs and summaries for each trend study. This makes it easier for users to understand trends and implement strategic changes in their campaigns.

6. Secondary research

Secondary research is a research method that involves collecting and analyzing documents, records, and reviews that provide you with contextual data on your topic. You’re not connecting with participants directly, but rather accessing pre-existing available data. For example, you can pull out insights from your UX research repository to reexamine how they apply to your new UX research objective.

Strictly speaking, it can be both qualitative and quantitative—but today we focus on its qualitative application.

When to use secondary research

Record keeping is particularly useful when you need supplemental insights to complement, validate, or compare current research findings. It helps you analyze shifting trends amongst your users across a specific period. Some other scenarios where you need record keeping include:

Initial discovery or exploration phase: Secondary research can help you quickly gather background information and data to understand the broader context of a market
Design and development phase: See what solutions are working in other contexts for an idea of how to build yours

Secondary research is especially valuable when your team faces budget constraints, tight deadlines, or limited resources. Through review mining and collecting older findings, you can uncover useful insights that drive decision-making throughout the product design and development process.

How to conduct secondary research:

Outline your UX research objective
Identify potential data sources for information on your product, market, or target audience. Some of these sources can include: a. Review websites like Capterra and G2 b. Social media channels c. Customer service logs and disputes d. Website reviews e. Reports and insights from previous research studies f. Industry trends g. Information on competitors
Analyze your data by identifying recurring patterns and themes for insights

Secondary research: A qualitative research example

SafeSurf is a cybersecurity platform that offers threat detection, security audits, and real-time reports. After conducting multiple rounds of testing, you need a quick and easy way to identify remaining usability issues. Instead of conducting another resource-intensive method, you opt for social listening and data mining for your secondary research.

Browsing through your company’s X, you identify a recurring theme: many users without a background in tech find SafeSurf ’s reports too technical and difficult to read. Users struggle with understanding what to do if their networks are breached.

After checking your other social media channels and review sites, the issue pops up again.

With your gathered insights, your team settles on introducing a simplified version of reports, including clear summaries, takeaways, and step-by-step protocols for ensuring security.

By conducting secondary research, you’ve uncovered a major usability issue—all without spending large amounts of time and resources to connect with your users.

7. Open-ended surveys

Open-ended surveys are a type of unmoderated UX research method that involves asking users to answer a list of qualitative research questions designed to uncover their attitudes, expectations, and needs regarding your service or product. Open-ended surveys allow users to give in-depth, nuanced, and contextual responses.

When to use open-ended surveys

User surveys are an effective qualitative research method for reaching a large number of users. You can use them at any stage of the design and product development process, but they’re particularly useful:

When you’re conducting generative research : Open-ended surveys allow you to reach a wide range of users, making them especially useful during initial research phases when you need broad insights into user experiences
When you need to understand customer satisfaction: Open-ended customer satisfaction surveys help you uncover why your users might be dissatisfied with your product, helping you find the root cause of their negative experiences
In combination with close-ended surveys: Get a combination of numerical, statistical insights and rich descriptive feedback. You’ll know what a specific percentage of your users think and why they think it.

How to conduct open-ended surveys:

Design your survey and draft out a list of survey questions
Distribute your surveys to respondents
Analyze survey participant responses for key themes and patterns
Use your findings to inform your design process

Open-ended surveys: A qualitative research example

You're a UX researcher for RouteReader , a comprehensive logistics platform that allows users to conduct shipment tracking and route planning. Recently, you’ve launched a new predictive analytics feature that allows users to quickly identify and prepare for supply chain disruptions.

To better understand if users find the new feature helpful, you create an open-ended, in-app survey.

The questions you ask your users:

“What has been your experience with our new predictive analytics feature?"
“Do you find it easy or difficult to rework your routes based on our predictive suggestions?”
“Does the predictive analytics feature make planning routes easier? Why or why not?”

Most of the responses are positive. Users report using the predictive analytics feature to make last-minute adjustments to their route plans, and some even rely on it regularly. However, a few users find the feature hard to notice, making it difficult to adjust their routes on time.

To ensure users have supply chain insights on time, you integrate the new feature into each interface so users can easily spot important information and adjust their routes accordingly.

💡 Surveys are a lot easier with a quality survey tool. Maze’s Feedback Surveys solution has all you need to ensure your surveys get the insights you need—including AI-powered follow-up and automated reports.

Qualitative research vs. quantitative research: What’s the difference?

Alongside qualitative research approaches, UX teams also use quantitative research methods. Despite the similar names, the two are very different.

Here are some of the key differences between qualitative research and quantitative research .

Research type
Qualitative research			.
Quantitative research

Before selecting either qualitative or quantitative methods, first identify what you want to achieve with your UX research project. As a general rule of thumb, think qualitative data collection for in-depth understanding and quantitative studies for measurement and validation.

Conduct qualitative research with Maze

You’ll often find that knowing the what is pointless without understanding the accompanying why . Qualitative research helps you uncover your why.

So, what about how —how do you identify your 'what' and your 'why'?

The answer is with a user research tool like Maze.

Maze is the leading user research platform that lets you organize, conduct, and analyze both qualitative and quantitative research studies—all from one place. Its wide variety of UX research methods and advanced AI capabilities help you get the insights you need to build the right products and experiences faster.

Frequently asked questions about qualitative research examples

What is qualitative research?

Qualitative research is a research method that aims to provide contextual, descriptive, and non-numerical insights on a specific issue. Qualitative research methods like interviews, case studies, and ethnographic studies allow you to uncover the reasoning behind your user’s attitudes and opinions.

Can a study be both qualitative and quantitative?

Absolutely! You can use mixed methods in your research design, which combines qualitative and quantitative approaches to gain both descriptive and statistical insights.

For example, user surveys can have both close-ended and open-ended questions, providing comprehensive data like percentages of user views and descriptive reasoning behind their answers.

Is qualitative or quantitative research better?

The choice between qualitative and quantitative research depends upon your research goals and objectives.

Qualitative research methods are better suited when you want to understand the complexities of your user’s problems and uncover the underlying motives beneath their thoughts, feelings, and behaviors. Quantitative research excels in giving you numerical data, helping you gain a statistical view of your user's attitudes, identifying trends, and making predictions.

What are some approaches to qualitative research?

There are many approaches to qualitative studies. An approach is the underlying theory behind a method, and a method is a way of implementing the approach. Here are some approaches to qualitative research:

Grounded theory: Researchers study a topic and develop theories inductively
Phenomenological research: Researchers study a phenomenon through the lived experiences of those involved
Ethnography: Researchers immerse themselves in organizations to understand how they operate

This paper is in the following e-collection/theme issue:

Published on 19.8.2024 in Vol 26 (2024)

How Does an Online Mental Health Community on Twitter Empower Diverse Population Levels and Groups? A Qualitative Analysis of #BipolarClub

Authors of this article:

Original Paper

Horeya AbouWarda, MSc ;
Mateusz Dolata, PhD ;
Gerhard Schwabe, PhD

Department of Informatics, Faculty of Business, Economics and Informatics, University of Zurich, Zurich, Switzerland

Corresponding Author:

Horeya AbouWarda, MSc

Department of Informatics

Faculty of Business, Economics and Informatics

University of Zurich

Binzmuehlestrasse 14

Zurich, 8050

Switzerland

Phone: 41 44 635 75 83

Fax:41 44 635 68 09

Email: [email protected]

Background: Social media, including online health communities (OHCs), are widely used among both healthy people and those with health conditions. Platforms like Twitter (recently renamed X) have become powerful tools for online mental health communities (OMHCs), enabling users to exchange information, express feelings, and socialize. Recognized as empowering processes, these activities could empower mental health consumers, their families and friends, and society. However, it remains unclear how OMHCs empower diverse population levels and groups.

Objective: This study aimed to develop an understanding of how empowerment processes are conducted within OMHCs on Twitter by identifying members who shape these communities, detecting the types of empowerment processes aligned with the population levels and groups outlined in Strategy 1 of the Integrated People-Centred Health Services (IPCHS) framework by the World Health Organization (WHO), and clarifying members’ involvement tendencies in these processes.

Methods: We conducted our analysis on a Twitter OMHC called #bipolarclub. We captured 2068 original tweets using its hashtag #bipolarclub between December 19, 2022, and January 15, 2023. After screening, 547 eligible tweets by 182 authors were analyzed. Using qualitative content analysis, community members were classified by examining the 182 authors’ Twitter profiles, and empowerment processes were identified by analyzing the 547 tweets and categorized according to the WHO’s Strategy 1. Members’ tendencies of involvement were examined through their contributions to the identified processes.

Results: The analysis of #bipolarclub community members unveiled 5 main classifications among the 182 members, with the majority classified as individual members (n=138, 75.8%), followed by health care–related members (n=39, 21.4%). All members declared that they experience mental health conditions, including mental health and general practitioner members, who used the community as consumers and peers rather than for professional services. The analysis of 547 tweets for empowerment processes revealed 3 categories: individual-level processes (6 processes and 2 subprocesses), informal carer processes (1 process for families and 1 process for friends), and society-level processes (1 process and 2 subprocesses). The analysis also demonstrated distinct involvement tendencies among members, influenced by their identities, with individual members engaging in self-expression and family awareness support and health care–related members supporting societal awareness.

Conclusions: The examination of the #bipolarclub community highlights the capability of Twitter-based OMHCs to empower mental health consumers (including those from underserved and marginalized populations), their families and friends, and society, aligning with the WHO’s empowerment agenda. This underscores the potential benefits of leveraging Twitter for such objectives. This pioneering study is the very first to analyze how a single OMHC can empower diverse populations, offering various health care stakeholders valuable guidance and aiding them in developing consumer-oriented empowerment programs using such OMHCs. We also propose a structured framework that classifies empowerment processes in OMHCs, inspired by the WHO’s Strategy 1 (IPCHS framework).

Introduction

The role of social media and online mental health communities in consumer empowerment.

In this era of digital interconnectedness, the pervasive use of social media [ 1 ], including online health communities (OHCs), has become ubiquitous among both healthy people and those dealing with health conditions [ 2 ]. Platforms such as Twitter (recently renamed X) [ 3 , 4 ], Facebook [ 5 ], YouTube [ 6 ], and Reddit [ 7 ] have emerged as powerful tools for the formation and use of online mental health communities (OMHCs), in which users can exchange health-related information, advice, personal experiences, and social support; engage socially; express personal feelings; raise awareness about mental health and influence public conceptions; or merely observe the interactions of others [ 2 , 4 , 5 , 8 - 10 ]. Participating in these “empowerment processes” may lead to significant empowerment outcomes for users of OMHCs [ 11 , 12 ]. This empowerment potential of OMHCs could support various health consumer types, whether they are directly or indirectly engaged with health care systems [ 13 ]. It extends beyond mental health consumers (individuals coping with mental health conditions) to include their supporters and informal carers (eg, family and friends) and the broader public. The potential empowerment outcomes for mental health consumers engaging in OMHCs include better health self-management and navigation of health care systems as well as more self-esteem, self-efficacy, and involvement in decision-making during consultations with professionals, which could lead to better health outcomes and quality of life [ 5 , 9 , 14 , 15 ]. These online communities could also benefit supporters and informal carers and society at large by enhancing mental health literacy and awareness [ 16 ]. However, despite extensive research investigating and acknowledging the pivotal role of social media and OMHCs in fostering consumer empowerment, it has remained unclear how OMHCs empower diverse population levels and groups.

The Global Consumer Empowerment Movement and the Use of Social Media and OMHCs

Consumer empowerment implies providing people with the educational and supportive resources and opportunities they need in order to acquire the knowledge and skills necessary to have active roles in decisions and actions that impact their health [ 13 , 17 ]. Furthermore, the collaboration between health care stakeholders (eg, organizations and professionals) and health consumers is integral to consumer empowerment in health care systems [ 13 ]. This collaboration with consumers, commonly known as “coproduction” and “cocreation” of knowledge generation, decision-making, health services, and healthy environments, plays a crucial role in addressing their specific needs and elevating the overall effectiveness of health care [ 13 , 18 ].

Interest in consumer empowerment has fueled a global health care movement in which individuals, their families, informal carers, and communities are supported to actively participate in decisions and actions that influence their health [ 13 , 17 , 19 ]. Various health care stakeholders have adopted this movement worldwide, including health systems, authorities, institutions, professionals, and researchers, as well as nongovernmental health organizations, such as the World Health Organization (WHO) [ 17 , 19 ]. Consumer empowerment has become a global choice, as it could not only improve consumers’ health outcomes but could also address the challenges faced by health care systems (eg, rising health care costs, chronic disease burdens, and staff shortages) and contribute to their effectiveness and sustainability [ 17 ].

To steer the consumer empowerment movement, the WHO has provided comprehensive guidelines, exemplified by the Integrated People-Centred Health Services (IPCHS) framework, particularly its Strategy 1 (empowering and engaging people and communities), which outlines four key approaches: (1) empowering and engaging individuals and families, (2) empowering and engaging communities, (3) empowering and engaging informal carers, and (4) reaching the underserved and marginalized [ 13 ]. In addition, specifically in mental health, the WHO’s Comprehensive Mental Health Action Plan 2013-2030 has embraced consumer empowerment principles [ 20 ], emphasizing the importance of empowering and involving mental health consumers, their families, informal carers, and communities in mental health care. These principles are further endorsed in other WHO statements, such as the World Mental Health Report [ 21 ] and the Guidance on Community Mental Health Services [ 22 ]. In addition to these principles, in the action plan and the other 2 statements, the WHO has encouraged related organizations and professionals to increase the use of social media and digital support groups (eg, online communities) as integral components of digital mental health solutions.

Building on the IPCHS framework’s principles, including its Strategy 1, which suggests the integral role of OMHC users as participants in health systems and aims to provide responsive health services that better address people’s needs both within and beyond the health sector [ 13 ], OMHCs could serve as valuable environments for supporting Strategy 1. These online communities could facilitate consumer value cocreation in health care [ 18 , 23 ], in which health consumers from diverse population levels and groups and multiple health care stakeholders (eg, health organizations, professionals, and OMHC moderators) [ 5 , 8 , 10 , 16 , 24 ] could engage in a collaborative process of sharing knowledge, experiences, and insights. These activities could not only benefit consumers within OMHCs but could also enhance the overall quality and responsiveness of online and offline health care services (eg, the development of consumer-oriented empowerment programs in OMHCs and improvements to conventional mental health services). Thus, OMHCs could support the objectives of the IPCHS framework and its Strategy 1, extending beyond traditional mental health service paradigms to promote a more inclusive and accessible consumer empowerment approach. Furthermore, although the WHO’s encouragement to use these platforms may primarily seek to harness such potential advantages, it may also indicate an attempt to fill gaps in mental health services and resources [ 25 ] that may not be adequately or readily available elsewhere. This could be due to the challenges within health care systems, such as insufficient funding for alternative mental health solutions. Despite these potential benefits of OMHCs, they are not immune to the drawbacks of online environments. Some studies have reported risks associated with the use of OMHCs, such as the potential of developing unrealistic expectations or confusion about one’s condition due to untrustworthy information from others’ experiences or advice [ 9 ] and the possibility of adverse events arising from exposure to triggering content or negative interactions [ 5 ]. Nonetheless, despite these risks, the vital role of OMHCs in fostering consumer empowerment cannot be overlooked, given their potential to improve access to mental health resources and address existing service gaps.

Although several health care stakeholders, such as mental health organizations and health professionals [ 26 , 27 ], use OMHCs on social media for consumer empowerment activities, their endeavors cannot be fully realized without a nuanced understanding of how these communities empower diverse population levels and groups. In other words, it is crucial to identify the members who use and form OMHCs, the various types of empowerment processes in such communities, and how their members contribute to these processes. These insights can help various health care stakeholders in leveraging the full potential of OMHCs, enabling the design of tailored supportive resources aligned with specific needs and the development of consumer-oriented mental health programs and services. In addition, a recent study has called for a better understanding of OMHCs on social media regarding how these communities are formed, who their members are, and how they work [ 5 ], which underscores the necessity for comprehensive insights to fully leverage their potential and contribute valuable knowledge to the ongoing research in this field.

Existing Research on Consumer Empowerment Processes in OMHCs and OHCs

Consumer empowerment processes are activities that allow people to be capable, active, and engaged in controlling actions or decisions that impact their health [ 11 , 12 ]. Research in the field of OMHCs and empowerment activities has primarily focused on the empowerment of a specific population level and/or group, including mental health consumers at the individual level [ 5 , 15 ] and those from racial and ethnic minority groups [ 8 ]. Some studies were influenced by conceptual frameworks for personal mental health recovery, such as the POETIC (Purpose and Meaning, Optimism and Hope, Empowerment, Tensions, Identity, Connectedness) and the CHIME (Connectedness, Hope and Optimism, Identity, Meaning and Purpose, Empowerment) frameworks [ 28 ]. Other studies have concentrated on informal carers and supporters, notably family and friends (pivotal in the well-being of individuals with mental health conditions) [ 24 , 29 ], along with societal-level considerations [ 16 ]. These studies indicate that OMHCs on social media involve empowerment processes aligned with the population levels and groups outlined in Strategy 1 of the WHO’s IPCHS framework. However, to the best of our knowledge, existing research has not yet examined these processes in the context of Strategy 1 within OMHCs. In response to the WHO’s call for enhanced use of these online platforms in mental health, gaining deeper insights into empowerment processes aligned with Strategy 1 in OMHCs is crucial to guide effective use. In addition, investigating OMHCs as a digital mental health solution while considering diverse populations and adhering to global standards is of great research interest [ 30 ], as it promises to address mental health disparities and enhance global access to care.

Furthermore, current research on empowerment activities has focused mainly on social media–based OHCs addressing various health conditions [ 31 ] or web-based OHCs focusing on non–mental health conditions [ 32 , 33 ] rather than specifically investigating social media–based OMHCs. Given the acknowledged differences in the nature of social media–based and web-based OHCs [ 34 ] and the variability in support needs across different circumstances [ 35 ], extending findings from OHCs not focused on social media and mental health to social media–based OMHCs may not be entirely appropriate. It is also imperative to focus on OHCs dedicated to mental health, given the recent rapid global increase in mental health conditions [ 36 ]. This surge in the number of individuals with mental health conditions has put additional strain on health care systems, which may lead, for instance, to longer intervals between consultations. Meanwhile, these individuals may already encounter substantial barriers to using mental health services. For example, recent studies focused on bipolar disorder have reported such barriers faced by those affected, including the delay in obtaining the right diagnosis, limited local availability of psychiatrists, and a lack of insurance coverage [ 25 , 37 ]. Given these challenges, mental health consumers may increasingly turn to OMHCs on popular social media platforms to seek support and connect with peers or professionals, drawing on their familiarity with these platforms from other contexts. Therefore, it is crucial that we urgently examine this specific context.

Twitter as a Mental Health Solution for Consumer Empowerment

Twitter is one of the most popular social media platforms used in health care practices [ 34 , 38 ]. It offers a distinctive outlet for its users to connect and engage in empowering activities over a popular, publicly accessible, and user-friendly information distribution platform, facilitating the widespread dissemination of information to a wider audience without constraints tied to any account or community following [ 39 , 40 ]. Communities on Twitter are often created bottom-up around a hashtag. Hashtags (a # sign followed by one or more words relating to a specific topic) are usually used to label tweets. These hashtags allow several users to view and contribute to the discussed topic, formulating communities of users talking about common topics, such as #depressionsucks [ 41 ] and #schizophrenia [ 27 ]. Several studies have reported that mental health–related hashtags on Twitter are valuable solutions for various empowering activities, such as discussing symptoms, personal experiences, life challenges, and mental health care policies; raising awareness; combating stigma; and exchanging different kinds of support [ 8 , 16 , 27 , 41 , 42 ]. Other studies have documented empowerment outcomes for those who use Twitter for mental health discussions [ 4 , 43 ]. Most of these studies have directly and indirectly acknowledged Twitter’s features as conducive to creating a mental health support ecosystem capable of reaching a wide audience, highlighting its potential to support global empowerment initiatives for various populations. However, despite extensive research on Twitter and mental health, the specific processes through which OMHCs on Twitter could empower diverse population levels and groups in line with global empowerment objectives, such as Strategy 1 of the WHO’s IPCHS framework, have not yet been elucidated.

Purpose of This Study

This study aimed to describe and explain how OMHCs on Twitter empower diverse population levels and groups. Therefore, we formulated three subquestions to address how empowerment processes are conducted within an OMHC on Twitter called #bipolarclub:

Who are the members that use and form the OMHC, and how do they participate in it?
Mental health consumers
Underserved and marginalized mental health consumers
Their families and informal carers
The broader community (society)
What are the tendencies of the OMHC’s members in contributing to and being involved in these empowerment processes?

To achieve our research goals, we conducted a qualitative exploratory study on the #bipolarclub community. This method offers a nuanced understanding and classification of behaviors, surpassing the scope of statistical analyses. Specifically, we opted for qualitative content analysis because it is a widely recognized and validated method used in previous research to systematically code and categorize communication content on social media platforms [ 41 , 44 ].

Our choice of the #bipolarclub community as the subject of our study is deliberate and aligned with our research context; moreover, this community is active, interactive, substantial, heterogeneous, and rich in its activities, meeting the recommended criteria outlined by Kozinets [ 45 ] and Salzmann-Erikson and Eriksson [ 46 ] for exploratory studies of online communities. Furthermore, the #bipolarclub community is not merely a congregation around a specific hashtag. It is a well-established entity with a dedicated Twitter account managed by the community’s moderators, who oversee its activities. This characteristic sets it apart as a stable and enduring community rather than one formed around a transient trend.

Data Collection

We extracted tweets originating from the #bipolarclub hashtag in the Bipolar Club community on Twitter. As evident by its website [ 47 ], #bipolarclub is an OMHC that was established in March 2021 by mental health consumers. Despite its name, which suggests a focus on bipolar disorder and a primary aim of supporting those dealing with it, a nuanced perspective is presented on the community’s Twitter account. A prominently pinned tweet clarifies that the community extends beyond a specific disorder or particular persons, welcoming anyone interested in mental health issues generally [ 48 ].

A total of 2068 tweets were collected for a period of 4 weeks from December 19, 2022, to January 15, 2023. We used the Twitter search application programming interface (API; Twitter Inc; now X Corp) [ 49 ] and the Postman API development environment (Postman Inc) to gather data end points from Twitter that included the #bipolarclub hashtag. The collected data for each tweet contained its content and the Twitter profile of its author (user’s profile information). From a total of 2068 captured tweets, we excluded some based on the following criteria: (1) the type of tweet was not an original tweet or a reply tweet (retweets and quote tweets, n=1105, 53.4%); (2) the text was not in English (other languages, n=243, 11.8%); and (3) the tweet had no text content or contained irrelevant information (visual content, spam, and irrelevant tweets, n=173, 8.4%). Although tweets should include text content, we also considered embedded media in the analysis, such as images, graphics interchange formats (GIFs), videos, emojis, and links to external websites. After eliminating irrelevant tweets, our final data set consisted of 547 (26.5%) tweets written by 182 authors, as shown at the top of Figure 1 .

Ethical Considerations

Twitter, the platform that hosts the #bipolarclub community, operates as a public platform, allowing its content to be publicly available for research purposes [ 16 ]. Notably, only tweets from users with public profiles could be extracted; thus, private profiles are protected by default from being involved in research studies. Given the public nature of the tweets used for the analysis, our study meets the criteria for waiving informed consent [ 50 , 51 ]. Although we met these criteria, we deemed it ethically necessary to inform the #bipolarclub community’s crew about our study intentions beforehand. The first author (HA) communicated with the moderator via private messages from a dedicated Twitter account for the study to the community’s account and clearly identified the researcher’s identity and the study purpose. Subsequently, the moderator discussed our intentions with other crew members and supported our study through a private message on the established communication channel.

Throughout the study, we also adhered to the ethical guidelines of the Association of Internet Researchers [ 52 ] to protect Twitter users’ privacy. After the analysis, any information that may have led to the identification of users (eg, @usernames and names) was replaced with pseudonyms in the reported tweets, except for those belonging to institutions that provide mental health care services. The reported tweets were also paraphrased to maintain anonymity, and precautions were taken to ensure that no identifiable information could be retrieved through the Twitter search function or search engines. We ensured that these paraphrased tweets reflect the original tweets’ content. This study’s research protocol and procedures were reviewed and approved by the Human Subjects Committee of the Faculty of Business, Economics and Informatics at the University of Zurich (OEC IRB # 2022-093).

Data Analysis

After the data collection, all tweets were imported into a secure password-protected Excel spreadsheet (Microsoft Corp) for subsequent qualitative analysis. To facilitate this analysis, we used NVivo software (version 20; QSR International) to conduct qualitative content analysis [ 53 ]. The initial analysis was spearheaded by the first author (HA), who developed a preliminary coding scheme to classify #bipolarclub community members and to thematically analyze the empowerment processes conveyed in the tweets. To ensure a systematic approach, hierarchical structures were generated, including classifications and subclassifications for members analysis, along with descriptive categories for empowerment processes analysis. These structures facilitated a standardized comparison among members and across empowerment processes, and they were independently reviewed by the second and third authors (MD and GS) and discussed again, leading to refinement by the entire research team. The 3 researchers who oversaw this analysis have extensive expertise in qualitative research methodologies.

OMHC Members Analysis

To identify #bipolarclub community members, we applied an inductive approach to categorize them [ 53 ]. We used the user information of the 182 authors of the tweets to inspect their Twitter profiles using the Twitter search function to classify their entities. The categorization was based on cues from their personal descriptions (bios) and the tweets posted on their profiles [ 54 ], including pinned tweets as well as tweets posted during the 4-week study period (with or without the hashtag #bipolarclub). However, we only considered their tweets that included the hashtag #bipolarclub to detect their engagement within the community. Each member was assigned to the most pertinent category.

Consumer Empowerment Processes Analysis

To detect the empowerment processes aligning with the population levels and groups outlined in Strategy 1 of the WHO’s IPCHS framework in the #bipolarclub community, we analyzed the 547 #bipolarclub tweets using a combined deductive and inductive analysis [ 53 ]. Initially, we used 3 frameworks: Strategy 1, social support behavior types, and the motivations of mental health consumers for establishing the #bipolarclub community. This deductive phase laid the groundwork for a categorization structure that encompasses potential empowerment processes.

Empowerment process categories were defined based on Strategy 1 [ 13 ], and prior research considered this strategy in mHealth [ 55 ], aligning with the population levels and groups stated in the 4 substrategies of Strategy 1: individuals and families (Strategy 1.1), communities (Strategy 1.2), informal carers (Strategy 1.3), and underserved and marginalized individuals (Strategy 1.4). We then used the other 2 frameworks, social support behavior types and motivating factors that led to the community’s establishment, to identify potential empowerment processes and subprocesses aligning with the predefined process categories. The inclusion of social support behavior types stemmed from their prevalence as empowerment processes within OHCs [ 31 ]. We also incorporated the motivations that drove mental health consumers to establish the #bipolarclub community because these drivers encapsulate the support needs that these consumers aim to address through this online community, which is a key facet of their empowerment. The social support behavior types were derived from the social support behavior code [ 32 , 56 , 57 ]. This code encompasses five social support types: (1) informational support, (2) tangible support, (3) esteem support, (4) network support, and (5) emotional support. The motivations for establishing the #bipolarclub community on Twitter were obtained from its website [ 47 ]; there were five drives: (1) connecting and making friends, (2) learning from one another, (3) free self-expression, (4) telling personal stories, and (5) fighting stigma. Duplications and overlaps among the 5 social support types and the 5 motivations for establishing the community were addressed, refining the considered empowerment processes for the deductive analysis.

Through an inductive analysis, we then identified additional empowerment processes that derived directly from the data, supplemented by insights from existing empirical and theoretical research. The identified empowerment processes and subprocesses, derived from both deductive and inductive analyses, were systematically organized based on the predefined categories of empowerment processes that align with the population levels and groups outlined in Strategy 1. Each tweet was coded into as many empowerment processes and subprocesses as were relevant, acknowledging that a single tweet may contain multiple statements reflecting various empowerment aspects. This comprehensive coding approach ensured that our analysis appropriately accounted for the multifaceted nature of tweets and the diversity of their content.

Examination of OMHC Members’ Contributions to Consumer Empowerment Processes

To identify the tendencies of contribution and involvement of #bipolarclub community members in the empowerment processes and subprocesses within the community, we applied a dual-coding approach. We coded each tweet with (1) its author’s classification code and (2) the empowerment process and subprocess codes it represented. This method enabled us to link the 547 tweets to both their authors’ classifications within the community and the specific empowerment processes and subprocesses to which they contributed. Figure 1 demonstrates the data analysis process in our study to address its 3 research objectives.

OMHC Member Analysis

A total of 547 #bipolarclub tweets were written by 182 authors from 13 countries: the United States (n=49, 26.9%), the United Kingdom (n=26, 14.3%), Canada (n=6, 3.3%), Australia (n=3, 1.6%), Norway (n=3, 1.6%), South Africa (n=2, 1.1%), Belgium (n=1, 0.5%), India (n=1, 0.5%), Kenya (n=1, 0.5%), Malaysia (n=1, 0.5%), Russia (n=1, 0.5%), Saudi Arabia (n=1, 0.5%), and Sweden (n=1, 0.5%). However, some users either did not have an available location (n=47, 25.8%) or mentioned a fictional location (n=39, 21.4%).

We categorized the 182 members into 5 main classifications and 6 associated subclassifications. Of the 182 members, the majority were individual members (138/182, 75.8%), followed by health care–related members (39/182, 21.4%), crew and moderator members (3/182, 1.6%), an organizational member (1/182, 0.5%), and the community’s Twitter account (1/182, 0.5%). All of these members, including health care–related members (academics and practitioners), the organizational member (the founder and chairman of the peer support foundation), and those managing the community’s account, were mental health consumers experiencing mental health conditions. This identification was based on statements within their tweets or their Twitter bios, in which they openly shared their experiences of mental health conditions. Furthermore, a key feature of their bios was that many members provided clear insights into their situations as mental health consumers, such as “ trying to deal with bipolar,” “mental health advocate,” and “Twitter as a venting space.” In addition, several members used usernames and names featuring terms relating to “bipolar” to explicitly express their mental health condition. Classifications and subclassifications of members and their descriptions and proportions of representing the #bipolarclub community are presented in Table 1 . Moreover, Multimedia Appendix 1 shows sample paraphrased personal descriptions (bios) and posted tweets on the Twitter profiles of members, offering further clarity regarding their classifications and subclassifications.

Classification and subclassifications		Description	Proportion of representing the community, n (%)
		A member who is an individual participant and does not have a health care–related affiliation	138 (75.8)
		A member who is an individual participant and has a volunteering, professional, or academic health care–related affiliation	39 (21.4)
	Mental health advocate	A member who is an active mental health advocate that supports promoting mental health care	33 (84.6)
	Mental health advocate and academic	A member who is an active mental health advocate that supports promoting mental health care and has an academic affiliation in the mental health care field (eg, researcher, graduate, and student)	2 (5.1)
	Mental health practitioner	A member who has a professional affiliation in the mental health care field (mental health care service provider)	2 (5.1)
	Mental health advocate and general practitioner	A member who is an active mental health advocate that supports promoting mental health care and has a professional affiliation in the health care field (general health care service provider)	1 (2.6)
	Mental health academic	A member who has an academic affiliation in the mental health care field (eg, researcher, graduate, and student)	1 (2.6)
		A member who has established and/or run the online community	3 (1.6)
		A member that is an organizational participant and has a health care–related affiliation	1 (0.5)
	Peer support foundation	A member that provides mental health peer support services as a nonprofit organization	1 (100)
		A digital member represents the online community’s entity on Twitter, which is run by its moderators	1 (0.5)

The individual members (138/182, 75.8%) who represented the majority of members in the #bipolarclub community were individuals from the general public with no health care–related affiliations. The tweets posted by these individual members primarily revolved around their personal lives and thoughts. The second largest category of members was composed of 21.4% (39/182) of persons with health care–related affiliations, including volunteering (mental health advocates); professional (mental health or general practitioners); or academic (researchers, graduates, or students) affiliations. In this category, members were classified into 5 subcategories. The largest subcategory included mental health advocates (33/39, 85%), who mainly tweeted content that reflected their active advocacy activities for promoting mental health care, such as volunteering for mental health organizations, providing motivational and awareness talks, supporting those who are struggling, and fighting stereotypes and stigma of mental health. It is also worth noting that both practitioner types (mental health and general practitioners) in this community tweeted as mental health consumers and peers, not for professional services, despite being identifiable as professionals in the health care–related classification. Their tweets suggested that they were primarily seeking support from the community. However, they were posting informative tweets to help as peers. This shows how the #bipolarclub community as an OMHC stimulated health care providers to engage as mental health consumers, seeking support rather than using it for professional health care service purposes.

The third category involved crew and moderator members, who represented 1.6% (3/182) of the online community. These members had established the community and/or were running its activities. These activities included retweeting supportive tweets, replying to members, monitoring discussions, posting announcements, contributing with helpful resources, and moderating audio conversations held on Twitter Spaces [ 58 ] through the community’s account, which help make the online community a positive outlet for its members [ 5 ]. The next classification was formed of an organizational member (1 peer support foundation), representing 0.5% (1/182) of the community. This foundation was a nonprofit organization that provides peer support services. It was tweeting to share its activities, including peer support groups provided by its team members, and to introduce new team members to the community. The last classification consisted of the Twitter account of the #bipolarclub community, with 0.5% (1/182) representing the community’s members. We considered the community’s account as a member in this categorization because it serves as a digital representative of the online community, tweeting and interacting with its members.

Consumer Empowerment Processes Analysis and Examination of OMHC Members’ Contributions

Through the analysis of 547 #bipolarclub tweets, we identified 9 empowerment processes and 4 corresponding subprocesses within the #bipolarclub community. We structured these processes according to the population levels and groups outlined in the WHO’s Strategy 1 (IPCHS framework), along with the substrategy corresponding to each population level and group, as shown in Figure 2 .

As illustrated in Figure 2 , we positioned mental health consumers at the center, with the underserved and marginalized individuals as a subgroup, encircled by 2 tiers: their supporters and informal carers (primarily their families, followed by their friends) in the inner tier and the broader society in the outer tier. This figure suggests that the #bipolaclub community could foster a supportive and empowering environment, with its influence extending beyond individual well-being to a broader societal impact. As indicated by the 3-dotted boxes in Figure 2 , we classified the 9 identified empowerment processes and their 4 associated subprocesses into 3 categories: individual-level processes, informal carer processes, and society-level processes. Individual-level processes support mental health consumers and address the needs of the underserved and marginalized individuals. Informal carer processes extend support to family members and friends, while society-level processes aim to benefit society at large. Our examination revealed that the identified empowerment processes within the #bipolarclub community addressed all the 4 substrategies of Strategy 1. Table 2 provides detailed descriptions, frequencies of tweets, and the contribution proportions of the community members for the identified empowerment processes and subprocesses.

Population level and group, substrategy of Strategy 1 , and empowerment process and subprocess			Description		Sample paraphrased tweet		Tweet frequency, n (%)	Contribution proportions of community members, n (%)


			Provision of health-related information about mental health conditions and coping strategies, including both objective and fact-based information as well as experiential insights derived from personal experiences		—		519 (94.9)	: 331 (63.8) : 141 (27.2) : 28 (5.4) : 17 (3.3) : 2 (0.4)
	Experiential informational support	Provision of information derived from personal experiences, offering firsthand insights into navigating everyday life with mental health conditions, as well as self-management and coping mechanisms, including medical, therapeutic, and health care system experiences		“I bought myself a new diary... It helped me track my moods and feelings...”		468 (90.2)
	Objective informational support	Provision of information that is impartial and fact based, including mental health–related education materials, advice, and referrals		“...who suffers from bipolar 1 and vestibular migraines, I found this research really interesting...”		113 (21.8)
			Self-disclosing personal feelings, thoughts, daily life experiences, and challenges of living with mental health conditions, as well as self-motivational expressions		“I’ve never had a life. Only surviving...”		414 (75.7)
			Communicating with affiliation to the online community as well as provision of offers to gain access to its members		“...We #bipolarclub, could all collectively help to end your depression...”		221 (40.4)
			Provision of care, love, encouragement, and understanding expressions		“Thank you so much lovely people. Really thanks a lot. I should be dead! But I’m still alive because of you...”		126 (23)
			Provision of affirmation in ability and compliment expressions, as well as expressions of agreement on a situation and alleviating a sense of guilt about a situation		“It’s great for you, me, and the community that you’re open about how you’re managing your disease. I appreciate the content you’re sharing...”		52 (9.5)
			Provision of offers to help and to join activities or events that are needed to cope with the challenges of mental health conditions, including online and offline peer support groups		“Hello #bipolarclub! Come participate in our Twitter Space gathering today! We’ll be discussing communication skills...”		32 (5.9)

			Provision of diverse forms of individual-level support to address the specific needs of individuals from underserved and marginalized populations, including children and individuals from racial and ethnic minority groups (Black population)		“[email protected] free Black mental health support group by Black therapists who understand us...”		21 (3.8)


			Provision of information that pertains to both mental health– and family-related aspects, including personal experiences with families		“The past couple of days, I was all right, but today I woke up feeling terrible and can’t bring myself to get out of bed. I hope my daughter can understand...”		39 (7.1)

			Provision of information that pertains to both mental health– and friend-related aspects, including personal experiences with friends		“...losing friends from having bipolar...it’s hard...no one can understand...”		14 (2.6)


			Provision of information that pertains to both mental health– and societal-related aspects, addressing social misconceptions and stigmatization of mental health conditions and offering perspectives on the actual experiences and realities associated with mental health conditions		—		77 (14.1)
	Perceptive awareness support	Provision of information that addresses social misconceptions surrounding mental health conditions, including clarifications of these misconceptions, insights into the reality of mental health conditions, and personal experiences in society		“...the most thing I hope people to know about bipolar disorder...that it is not the same thing as mood swings...”		65 (84.4)
	Destigmatization support	Provision of information that addresses the destigmatization of mental health conditions in society, including antistigma expressions and personal experiences with mental health stigma		“...I discuss bipolar disorder because I want to destigmatize it... Stigma is a terrifying thing...”		18 (23.4)

a The 4 substrategies of Strategy 1: Strategy 1.1 (empowering and engaging individuals and families), Strategy 1.2 (empowering and engaging communities), Strategy 1.3 (empowering and engaging informal carers), and Strategy 1.4 (reaching the underserved and marginalized).

b Not available.

c IM: individual member.

d HM: health care–related member.

e CM: crew and moderator member.

f CA: the community’s Twitter account.

g OM: organizational member.

Individual-Level Empowerment Processes: Supporting Individuals (Mental Health Consumers), Including the Underserved and Marginalized Individuals

Our analysis of empowerment processes that sought to support individuals with mental health conditions in the #bipolarclub community revealed 6 distinct types of processes and 2 associated subprocesses. This individual-level category of processes could benefit a mental health consumer to be empowered. These processes also addressed the specific needs of the underserved and marginalized individuals. Among the 547 eligible tweets, the 6 identified empowerment processes in the #bipolarclub community included informational support (n=519, 94.9%), self-expression support (n=414, 75.7%), network support (n=221, 40.4%), emotional support (n=126, 23%), esteem support (n=52, 9.5%), and tangible support (n=32, 5.9%). Furthermore, 3.8% (n=21) of the tweets in these processes focused on addressing the specific needs of individuals from underserved and marginalized populations. Table 2 illustrates the results of this analysis, descriptions of processes, samples of tweets, and the contribution proportions of the community members.

The most prevalent individual-level empowerment process in the #bipolarclub community was informational support, constituting 94.9% (519/547) of the tweets. In the informational support process, 2 subprocesses emerged, each defined by the type of mental health–related information exchanged through tweets. Experiential insights from personal experiences shaped the experiential informational support subprocess (468/519, 90.2%), while objective and fact-based information formed the objective informational support subprocess (113/519, 21.8%). Tweets in both subprocesses addressed various aspects of mental health conditions and coping strategies. Experiential informational support (468/519, 90.2%) was the predominant subprocess. In this empowerment subprocess, #bipolarclub community members exchanged personal experiences relating to their daily encounters with mental health conditions, as well as self-management and coping strategies, including medical and therapeutic experiences as well as interactions with the health care system:

...have a space for venting...it helps...

...so happy...first...hospitalization...I feel better...

I have been misdiagnosed over 10 times...

I’ve a Zoom appointment with my psychologist...it’s better to be in person, but he only visits my area monthly...

...if you need support contact @BipolarUK @IntlBipolar...it’s helpful...

...my insurance doesn’t cover my psych meds $1600 a month...

In the other empowerment subprocess, objective informational support (113/519, 21.8%), #bipolarclub community members exchanged tweets involving mental health–related education content, advice, and referrals:

... This article discusses a type of delusion called pseudocyesis, which refers to the false belief of being pregnant...

Take a cozy day off (or three) to recharge...

... Listening to “This Is Bipolar” podcast...

The second individual-level empowerment process was self-expression support. It constituted 75.7% (414/547) of the tweets. Tweets involved in this process show that #bipolarclub community members used it as an outlet for venting and sharing their emotions, thoughts, and challenges of living with mental health conditions, as well as self-motivational expressions:

I am in an absolutely fantastic mood today!...

I feel like I’m losing my fight with my disorder. I feel like my mind is taken a walk off the map...

This week, I’m actively searching for a job. Just last week, I was filling out disability papers. It feels like every week is a guessing game...

I will be okay, it’s not the first time, just like the previous time...

Network support was the third empowerment process in the mental health consumer category, comprising 40.4% (221/547) of the tweets. Members of the #bipolarclub community in this process tweeted expressions of belonging to the online community and exchanged offers to contact one another:

Fellow #bipolarclub...

If you’re up for a chat, please message me. 11:53 PM. I would like a chat with a Peer about right now...

The fourth individual-level empowerment process was emotional support, representing 23% (126/547) of the tweets. This process consisted of tweets among #bipolarclub community members expressing their care, love, encouragement, and understanding to one another:

... To all my #bipolarclub friends and family! Wishing you joyous holidays and hope everyone enjoyed a peaceful day!...

... Thanks #bipolarclub for making this year easier to handle...

... I wish you a wonderful day. If you’re feeling a bit low, just remember you woke up and faced life today. That’s a victory!...

...holidays...I know this time of year can be challenging...

The fifth empowerment process, esteem support, constituted 9.5% (52/547) of the tweets. Tweets in this process revealed that #bipolarclub community members were supporting one another through expressions of positive affirmations regarding capabilities, compliments, agreement on a situation, and alleviation of any feelings of guilt about a situation:

Living with bipolar doesn’t mean you’re broken; it means you are strong and brave for battling your mind every single day...

Yes. I’ve experienced... It’s exhausting...

Completely agree. I’m unable to get help... My general practitioner referrals have been denied twice, and I don’t have the funds for private help...

... If you’re facing depression, know that you’re not alone, millions of people worldwide understand what you’re going through...

The least prominent empowerment process identified in the individual-level category was tangible support, comprising 5.9% (32/547) of the tweets. These tweets demonstrate that the #bipolarclub community was used by its members to offer help to one another and announce activities or events crucial for coping with the challenges of mental health conditions, such as participation in peer support groups:

...I’m here if needed...

Hello #bipolarclub! Join our Twitter Space this Sunday as we delve into a discussion about establishing healthy boundaries in your relationships...

Our analysis also revealed that 3.8% (21/547) of the tweets in the identified empowerment processes at the individual level addressed the specific needs of individuals from underserved and marginalized populations. This formed a distinct subcategory of individual-level empowerment in the #bipolarclub community, as illustrated in Figure 2 . The content of tweets in this subcategory was particularly relevant to 2 groups, children and individuals from racial and ethnic minority groups (Black population):

The ACEs (adverse childhood experiences) score is important... Watch this video about childhood trauma!...

...free access to Black therapists...a group support via zoom...meet real Black therapists... Date of event...

As shown in Table 2 , #bipolarclub community members from all classifications contributed to the individual-level empowerment processes, with proportions reflecting their representation ratios and classifications within the community. Notably, among the 6 identified empowerment processes, health care–related members were the predominant contributors of tangible support content, in contrast to the other 5 processes with the largest proportion of posts by individual members.

Furthermore, health care–related members made their most substantial contribution to the empowerment process of tangible support, with 66% (21/32) of the tweets. By contrast, both individual members and crew and moderator members demonstrated their highest contribution ratios in self-expression support, with 68.8% (285/414) and 5.6% (23/414) of the tweets, respectively. The community’s account had its most significant contribution rate in the network support process (17/221, 7.7%), whereas the organizational member had it in the tangible support process (1/32, 3%).

Informal Carer Empowerment Processes: Supporting Informal Carers, Including Family Members and Friends

The examination of empowerment processes dedicated to supporting informal carers in the #bipolarclub community unveiled 2 processes, one tailored to family members and another to friends. We identified these 2 processes as family awareness support and friend awareness support. Of the 547 tweets, family awareness support comprised 7.1% (n=39) of the tweets, and friend awareness support included 2.6% (n=14) of the tweets. Table 2 shows descriptions of these processes, tweet samples, and the contribution proportions of the community members.

The most prominent empowerment process identified in the informal carer category was family awareness support, constituting 7.1% (39/547) of the tweets. Tweets in this process were composed of information that could support the engagement of families in mental health care, raise their awareness, and allow them to understand their crucial role in the well-being of individuals in their families with mental health conditions. The content of these tweets was related to both mental health conditions and family-related aspects. It involved mental health education materials relevant to families as well as personal experiences shared by #bipolarclub community members. These experiences covered interactions with families in general and specific family members, including parents, children, siblings, and partners:

... Some reading from the Bipolar Disorder Survival Guide “What You and Your Family Need to Know”...

It really hurts being the bipolar child who never gets invited to family gatherings, again...

I find it not easy to discuss my condition with others...especially...my parents...for fear of being blamed; that’s why I can’t be positive, there’re lots of people have rougher lives than you, so on...

My brother led me to a really dark place that I haven’t been in for a very long time, he doesn’t realize how much his words hurt all the time...

I was feeling scattered mentally yesterday, and I was terrible to my partner. I’m so relieved today, and he seems to have forgiven me...

In the informal carer category, the other empowerment process that we identified was friend awareness support (14/547, 2.6%). This process included tweets containing valuable information that could help involve friends in mental health care, enhance their awareness, and help them recognize their significant role in supporting and understanding their friends with mental health conditions. The content in these tweets was relevant to both mental health conditions and friend-related perspectives. It mainly consisted of personal experiences shared by #bipolarclub community members in relation to their friends:

My friend gifted me this wonderful book...it is really helpful during challenging days of depression…

...losing friends from having bipolar...it’s hard...no one can understand...

From the overall contributions of #bipolarclub community members to the 2 empowerment processes of the informal carer category, individual members contributed the most in both processes, family awareness support and friend awareness support. However, the contribution ratio of individual members in family awareness support (27/39, 69%) was higher than in friend awareness support (9/14, 64%). Furthermore, individual members and health care–related members were the only contributors to family awareness support. In addition, health care–related members made their strongest contribution in this category of processes in family awareness support (12/39, 31%). In contrast, the organizational member did not contribute to any process in the informal carer category, while crew and moderator members (1/14, 7%) and the community’s account (1/14, 7%) contributed solely to the friend awareness support process at the same percentage.

Society-Level Empowerment Processes: Supporting the Community (Society)

Our analysis of empowerment processes in the #bipolarclub community, aimed at supporting society, indicated that this online community involved 1 overarching process and 2 associated subprocesses. We identified the overarching process as social awareness support and the associated subprocesses as perceptive awareness support and destigmatization support. The findings revealed that of the 547 eligible tweets, social awareness support constituted 14.1% (n=77), wherein perceptive awareness support and destigmatization support accounted for 84% (65/77) and 23% (18/77), respectively. Table 2 describes the processes, samples of tweets, and the contribution proportions of the community members in each process.

The empowerment process of social awareness support (77/547, 14.1%) and its subprocesses, perceptive awareness support (65/77, 84%) and destigmatization support (18/77, 23%), emerged from tweets involving information that could inform and educate the public about mental health conditions and raise their awareness, as well as support to counter stigmatizing attitudes and engage society in mental health care. The provided information pertained to both mental health conditions and aspects associated with society. In addition, notably, tweets in the society-level empowerment processes often featured relevant hashtags such as #MentalHealthAwareness, #BipolarAwareness, #RaiseAwareness, #DepressionIsReal, #MentalHealthMatters, and #BreakTheStigma. This demonstrated that #bipolarclub community members were using their collective voice to reach the public.

The most prevalent subprocess in the social awareness support process was perceptive awareness support (65/77, 84%). This subprocess was composed of tweets containing explanations of misunderstandings regarding mental health conditions, glimpses into the actuality of mental health conditions, and lived experiences of mental health conditions in society:

... Stop saying it’s “their” FAULT to mental patients! The meds disrupt metabolism!...

I’ve been physically fit with a six-pack but still battled major depression and panic attacks...looking good on the outside doesn’t necessarily mean you’re mentally “healthy” on the inside...

I don’t like when people say they’re “so bipolar today” just because they can’t make up their minds...dear, it doesn’t work that way...

I don’t want anyone passing judgment on me during my episodes... Mental health challenges come in various ways. May we all learn to support each other with love, understanding, and compassion...

It seems I have got tardive dyskinesia from my antipsychotics...so embarrassed my twitching is pointed out by my coworker...

The other subprocess, destigmatization support (18/77, 23%), included expressions aimed at destigmatizing mental health conditions as well as personal experiences with mental health stigma:

It isn’t acceptable to use disrespectful, stigmatizing words describing any situation...bipolar is a real mental condition...

...I really want to appear with my real identity to #bipolarclub. But I am scared of the potential of someone from real life finding me. I wouldn’t be able to survive the shame & humiliation again...

While the major contributors in the empowerment processes of the individual-level category and the informal carer category were individual members, health care–related members were the major contributors in the society-level category. Health care–related members contributed to the social awareness support process by 47% (36/77) of the tweets, while individual members participated by 43% (33/77). Furthermore, health care–related members and individual members were the only contributors to the subprocess destigmatization support. In alignment with the informal carer category, the organizational member did not contribute to the society-level category. Crew and moderator members and the community’s account participated in the social awareness support process by 6% (5/77) and 4% (3/77) of the tweets, respectively.

Principal Findings

In this study, we have investigated an OMHC on Twitter called #bipolarclub by conducting a qualitative content analysis of tweets containing this hashtag circulated between December 19, 2022, and January 15, 2023. Through this analysis, we provided profound insights into three key aspects: (1) the members shaping the online community; (2) the various types of empowerment processes in it, aligned with the population levels and groups outlined in Strategy 1 of the WHO’s IPCHS framework; and (3) the contributions made by its members to these empowerment processes, elucidating their tendencies of involvement.

Overall, we have demonstrated that OMHCs such as #biplolarclub involve health professional members who have dual roles as both professionals and individuals coping with mental health conditions, which highlights the valuable insights and expertise they contribute to the community. We have also revealed that the #bipolarclub community includes empowerment processes catering to all the population levels and groups outlined in Strategy 1 of the WHO’s IPCHS framework. The online community contains processes for mental health consumers, including those from the underserved and marginalized populations, their informal carers (families and friends), and society at large. This finding indicates that an OMHC on Twitter holds promise for empowering diverse populations and supporting global empowerment objectives. Furthermore, our analysis has unveiled distinct contribution tendencies among the members to the empowerment processes in the #bipolarclub community. These tendencies showed diverse patterns of involvement in these processes. In the following sections, we thoroughly discuss our findings and provide suggestions on how these findings can be leveraged to promote consumer empowerment in OMHCs and mental health care.

OMHC Members

The #bipolarclub community is formed of 5 primary types of members: individual member, health care–related member, crew and moderator member, organizational member, and the community’s account. This categorization is generally aligned with a previous study that broadly discussed the identities of those who use OMHCs for peer support and the role of moderators in managing the communities [ 5 ]. However, our categorization provides deeper insights into the members who form OMHCs on Twitter. All #bipolarclub community members identified with a mental health condition, including practitioner members with health care–related affiliations. However, they used the community as consumers and peers, not for professional service purposes. This finding indicates that the #bipolarclub community involves a unique type of peers that could be identified as “professional peers.” These peers share similar features with those noted in previous studies as formal peers [ 59 ] and peer specialists [ 60 ]. This peer type in the community provides health-related information based not only on a similar personal experience but also on a professional one. They also serve as linkages with the health system [ 60 ].

Furthermore, these peers add value to the #bipolarclub community, as they can bring reliability and credibility to the health-related information provided therein. Compared with a previous study on Reddit, which reported that mental health professionals joined OMHCs solely to offer expert assistance [ 26 ], our study shows that professionals may also seek support for themselves as individuals affected by mental health conditions. Thus, we have introduced the concept of “professional peers” as a novel member category in OMHCs on social media that has not been previously documented.

Consumer Empowerment Processes

The identified empowerment processes in the #bipolarclub community imply that an OMHC on Twitter has the potential to achieve the empowerment objectives of Strategy 1 of the WHO’s IPCHS framework, along with all its substrategies. This includes empowering mental health consumers as well as addressing the specific needs of the underserved and marginalized individuals, their informal carers (families and friends), and society. The #bipolarclub community comprises 3 categories of empowerment processes, each supporting a specific population level and/or group: the individual-level category (mental health consumers including those from underserved and marginalized populations), the informal carer category (families and friends), and the society-level category.

Regarding the individual-level empowerment processes, the #bipolarclub community involved informational support and its subprocesses, experiential informational support and objective informational support, self-expression support, network support, emotional support, esteem support, and tangible support. Although previous studies indicated that informational and emotional support are the predominant social support types in OHCs [ 57 , 61 ] and are the 2 most common types sought by mental health consumers in online communities [ 5 ], our results indicate that the most exchanged social support types in the #bipolarclub community were informational and network support. This finding may be attributed to the networking mechanisms unique to Twitter, such as #hashtags, @username mentions, retweeting, and the following function [ 40 ], enabling #bipolarclub community members to engage in more interconnected communication compared with those connected in OHCs on other social media platforms [ 62 ]. A prior study that analyzed Twitter hashtags relating to bipolar disorder highlighted emotional support as the predominant social support type [ 63 ]. By considering a specific community and the types of members involved therein, we point toward network support as a key aspect. In addition, in a recent study that delved into empowerment processes, “finding recognition” was identified as a process in OMHCs [ 15 ]. This process aligns with the network support process in our study, emphasizing the idea that being connected in OMHCs with fellow community members who share similar illnesses and potentially have comparable life experiences can alleviate feelings of loneliness.

Our analysis also unveiled that the experiential informational support subprocess constitutes the majority of its main empowerment process informational support in the #bipolarclub community. This finding suggests that members could primarily use the community to learn from one another their personal experiences of dealing with mental health challenges, which aligns with one of the 5 motivations for establishing the #bipolarclub community (learning from one another) [ 47 ]. Although these firsthand experiences can help them in their management and coping strategies [ 61 ], they may also lead them to overlook professional guidance. In addition, #bipolarclub community members actively shared information and provided feedback on their experiences with the health care system. This finding indicates that the community could serve a dual function, helping its members to navigate the health care system more effectively [ 9 ], as well as offering valuable feedback to health care providers, thereby providing opportunities to enhance health care services [ 11 ]. This is particularly relevant in the #bipolarclub community, in which some members have dual roles as both mental health consumers and practitioners.

Our analysis also demonstrated that self-expression support emerged as a frequently practiced empowerment process among #bipolarclub community members. This implies that self-expression may represent a significant need among members, which could be met in the OMHC. Our finding supports previous assertions that mental health consumers commonly use OMHCs on social media [ 5 , 9 ] and Twitter [ 4 ] to self-express and vent, reaffirming the notion that OMHCs offer a conducive environment for expressing one’s true self owing to the anonymity afforded by social media [ 9 ]. The findings also showed that #bipolarclub community members were expressing their current emotions, thoughts, and challenges instantly, indicating that the real-time nature of Twitter could be a valuable tool for immediate release and a sense of catharsis for those struggling with mental health conditions.

Although the #bipolarclub community generally serves underserved and marginalized individuals (mental health consumers) [ 64 ], the content of its tweets addresses the needs of individuals who belong to 2 additional underserved and marginalized populations: children and racial and ethnic minority groups (Black population) [ 13 , 55 ]. The fact that Twitter can support consumers with dual underserved and marginalized status toward empowerment is not novel. An earlier study highlighted the creation of the hashtag #YouGoodMan on Twitter, which is specifically tailored for Black men to share their experiences with mental health conditions, exchange support, and navigate challenges stemming from cultural and social factors in the Black community [ 8 ].

Regarding the informal carer empowerment processes, the existence of family awareness support and friend awareness support processes in the #bipolarclub community signifies its potential to empower family members and friends of mental health consumers. The dissemination of mental health–related information linked to families and friends could serve as a valuable resource for enhancing their understanding of the challenges faced by those they are caring for [ 65 , 66 ] and their significant role in their well-being, which could facilitate their active engagement in mental health care practices. In addition, the public nature of Twitter allows users to access a diverse range of perspectives and information. With these findings, we underscore the pivotal role of firsthand information in OMHCs for informal carers, which is sourced directly from individuals who have experienced the situation themselves rather than from other informal carers. This aspect of firsthand information has been overlooked in the existing literature on informal carer empowerment in OMHCs.

Regarding the society-level empowerment processes, the presence of social awareness support and its subprocesses, perceptive awareness support and destigmatization support, highlights the capability of the #bipolarclub community to empower society. The community’s potential role as a facilitator of societal education is apparent through clarifications about social misconceptions regarding mental health conditions, personal experiences in the broader societal context, and antistigma posts. This content could enhance societal understanding and awareness of mental health conditions and could foster societal engagement in mental health care. The destigmatization support subprocess in the #bipolarclub community, aligned with the community’s core objective of fighting stigma [ 47 ], could address the stigmatizing challenges encountered by those dealing with mental health conditions in their daily lives in society [ 67 ]. Using the #bipolarclub community to combat stigma resonates with previous studies on Twitter [ 4 , 68 ], emphasizing Twitter’s key role in supporting mental health antistigma efforts. In addition, most tweets in the #bipolarclub community centered on raising awareness rather than directly addressing stigmatization. This finding indicates that the community could be adopting a proactive approach to building understanding and empathy with a more inclusive discourse around mental health issues.

Contributions of OMHC Members to Consumer Empowerment Processes

When examining members’ contributions to the 3 categories of empowerment processes in the #bipolarclub community, distinct patterns emerged regarding their involvement tendencies, reflecting their identities. Health care–related members were inclined to support societal awareness, mirroring their role as influencers and educators. In contrast, individual members were actively engaged in self-expression and significantly contributed to family awareness, reflecting the importance of personal expression and familial support in this group. In addition, the peer support foundation (organizational member) focused solely on supporting mental health consumers through tangible support, aligning with the core mission of such foundations in providing practical assistance to individuals in need. Akin to individual members, crew and moderator members used the #bipolarclub community as an outlet for personal expression. This tendency conforms with their primary role as individuals coping with mental health conditions, preceding their roles as crew and moderator members. The community’s account stood out for its active role in connecting with members and providing network support, aligning with its identity as a facilitator of community cohesion. These nuanced tendencies underscore the collaborative efforts of different member types, each bringing unique perspectives to the community’s empowerment processes. Notably, our findings differ from those of a study that examined tweets during Mental Health Awareness Week [ 16 ], which found similar contribution tendencies to the discourse among diverse users. However, our analysis focused on an OMHC’s tweets, which are not based on a trendy mental health–related hashtag, and we used different criteria for analyzing community members and tweets. Despite differing research goals, these findings suggest that Twitter users’ contribution tendencies in engaging in mental health discussions may vary depending on the context of use.

Implications

Our study has extended the research on the role of OMHCs in empowering people in significant ways. The key findings are as follows: (1) we identified the diverse members within an OMHC, clarifying their tendencies for engaging in empowerment processes; (2) while health care practitioners use OMHCs to support consumers, we revealed their multifaceted engagement to fulfill various roles simultaneously, acting as mental health consumers, peers, and providers of health information, sometimes disclosing their professional identities; and (3) we proved that an OMHC not only could facilitate empowerment processes for mental health consumers but could also extend their impacts to individuals from underserved and marginalized populations, informal carers (family and friends), and society at large, aligning with the WHO’s empowerment agenda (Strategy 1 of the IPCHS framework). In addition, we have proposed a structured framework for classifying the empowerment processes within OMHCs based on Strategy 1 of the WHO’s IPCHS framework, which embraces individual-level, informal carer, and society-level processes.

The study findings hold significant implications for various health care stakeholders, such as national and international health care organizations, health care professionals, and OMHC moderators. For instance, the WHO and other health care institutions can benefit by learning about the potential of OMHCs for empowering not only mental health consumers but also their families and friends as well as society. Thus, they could consider integrating these communities into standards, acknowledge their important roles in guidelines, and effectively support their development as an element in holistic approaches to mental health care. Our findings can also guide health care organizations and professionals to tailor their interventions and outreach strategies using these communities, ensuring more effective and targeted approaches for diverse population levels and groups to foster empowerment in mental health. Furthermore, moderators of OMHCs can leverage insights from our findings to provide dedicated support for diverse empowerment processes. We speculate that they could explore various uses for initiatives, such as motivating mental health consumers to tell their stories (eg, “tell-your-story” week) to express themselves and raise awareness among others.

Study Strengths

This study had several strengths. First, our examination of the #bipolarclub community forms part of a larger study to investigate the concept of consumer empowerment in the community following the netnography methodology that focuses on studying online communities’ behaviors [ 69 ]. Therefore, the findings of our analysis were based on in-depth immersion in the community. Second, by investigating empowerment processes supporting various population levels and groups, we offer a comprehensive and nuanced view of the empowerment concept within the community. Third, examining empowerment processes aligned with Strategy 1 of the WHO’s IPCHS framework has yielded profound insights into the types of processes that adhere to global standards within OMHCs. Often overlooked in prior studies, this aspect contributes a valuable perspective on the empowerment processes within OMHCs to the existing body of research. Thus, our proposed structured framework of empowerment processes’ classifications within OMHCs, based on Strategy 1, can serve as a novel foundation for future investigations of various OMHCs.

Study Limitations and Future Research

A possible limitation of this study is the classification of #bipolarclub community members based on their personal bios and the tweets posted on their profiles. This content may not necessarily represent their real-life identity and activities, potentially leading to inaccuracies. However, our passive data collection approach provides real and bias-free insights into how empowerment processes are conducted in the online community [ 70 ]. In addition, this approach precluded the examination of a member type in online communities, known as passive members and “lurkers” [ 71 ], who may be using the community. Further research could build on our study and explore this member type.

Another limitation of using a passive investigation is the challenge of demonstrating that the #bipolarclub community includes members beyond those who directly experience mental health conditions, such as family members, friends, and the public. However, since our analysis did not include passive members, it is important to acknowledge that merely lurking constitutes a form of engagement in empowerment processes. This implies that these populations still have considerable potential for being involved in the online community. In addition, Twitter’s open-access nature allows not only #bipolarclub community members but also other Twitter users to engage in these processes without restrictions, such as account following [ 39 ] or registration requirements such as private groups on Facebook. Furthermore, tweets using the #bipolarclub hashtag were often blended with other hashtags, expanding the community’s reach to a wider audience of Twitter users outside the scope of the community’s members [ 40 ], advertently and inadvertently engaging them in the empowerment processes. Future research endeavors could leverage our findings by examining the passive involvement of various population levels and groups within the #bipolarclub community.

We have also primarily focused on one aspect of the consumer empowerment concept, the processes (empowering activities), without considering its other aspect, the outcomes (states of being empowered), which may have limited our findings to provide a comprehensive understanding of the empowerment phenomenon in the online community. However, our study provides in-depth insights into these processes. Future research could investigate the empowerment outcomes in alignment with the empowerment processes we have identified.

Conclusions

Our analysis of members and empowerment processes in the #bipolarclub community highlights the capability of Twitter-based OMHCs to empower mental health consumers, including those from underserved and marginalized populations, along with their families and friends as well as society. Our study demonstrates the ability of a Twitter-based OMHC to facilitate empowerment processes for diverse population levels and groups aligning with the WHO’s empowerment agenda (Strategy 1 of the IPCHS framework), highlighting the potential advantages of using Twitter for such empowerment objectives. These findings also acknowledge the relevance of Twitter-based OMHCs in advancing global empowerment goals. As the use of OMHCs and Twitter continues to rapidly grow, exploring their potential holds promise for informing various health care stakeholders. This is particularly relevant for health care organizations, professionals, and OMHC moderators, as these insights could pave the way for developing consumer-oriented services and empowerment programs for different population levels and groups.

Acknowledgments

HA, a doctoral researcher, has been awarded a Swiss Government Excellence Scholarship from the Federal Commission for Scholarships for Foreign Students (FCS). We would like to acknowledge the FCS for supporting this research.

Conflicts of Interest

None declared.

Sample paraphrased personal descriptions (bios) and posted tweets on Twitter profiles of the #bipolarclub community’s members.

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Abbreviations

application programming interface

Connectedness, Hope and Optimism, Identity, Meaning and Purpose, Empowerment

graphics interchange formats

Integrated People-Centred Health Services

online health community

online mental health community

Purpose and Meaning, Optimism and Hope, Empowerment, Tensions, Identity, Connectedness

World Health Organization

Edited by K Williams; submitted 31.12.23; peer-reviewed by F Lobban, P Marshall; comments to author 09.03.24; revised version received 02.05.24; accepted 10.06.24; published 19.08.24.

©Horeya AbouWarda, Mateusz Dolata, Gerhard Schwabe. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 19.08.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research (ISSN 1438-8871), is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

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Rebecca Payne 1 ,
Aileen Clarke 1 ,
Nadia Swann 1 ,
Jackie van Dael 1 ,
Natassia Brenman 1 ,
Rebecca Rosen 2 ,
Adam Mackridge 3 ,
Lucy Moore 1 ,
Asli Kalin 1 ,
Emma Ladds 1 ,
Nina Hemmings 2 ,
Sarah Rybczynska-Bunt 4 ,
Stuart Faulkner 1 ,
Isabel Hanson 1 ,
Sophie Spitters 5 ,
http://orcid.org/0000-0002-7758-8493 Sietse Wieringa 1 , 6 ,
Francesca H Dakin 1 ,
Sara E Shaw 1 ,
Joseph Wherton 1 ,
Richard Byng 4 ,
Laiba Husain 1 ,
http://orcid.org/0000-0003-2369-8088 Trisha Greenhalgh 1
1 Nuffield Department of Primary Care Health Sciences , University of Oxford , Oxford , UK
2 Nuffield Trust , London , UK
3 Betsi Cadwaladr University Health Board , Bangor , UK
4 Peninsula Schools of Medicine and Dentistry , University of Plymouth , Plymouth , UK
5 Wolfson Institute of Population Health , Queen Mary University of London , London , UK
6 Sustainable Health Unit , University of Oslo , Oslo , Norway
Correspondence to Professor Trisha Greenhalgh; trish.greenhalgh{at}phc.ox.ac.uk

Background Triage and clinical consultations increasingly occur remotely. We aimed to learn why safety incidents occur in remote encounters and how to prevent them.

Setting and sample UK primary care. 95 safety incidents (complaints, settled indemnity claims and reports) involving remote interactions. Separately, 12 general practices followed 2021–2023.

Methods Multimethod qualitative study. We explored causes of real safety incidents retrospectively (‘Safety I’ analysis). In a prospective longitudinal study, we used interviews and ethnographic observation to produce individual, organisational and system-level explanations for why safety and near-miss incidents (rarely) occurred and why they did not occur more often (‘Safety II’ analysis). Data were analysed thematically. An interpretive synthesis of why safety incidents occur, and why they do not occur more often, was refined following member checking with safety experts and lived experience experts.

Results Safety incidents were characterised by inappropriate modality, poor rapport building, inadequate information gathering, limited clinical assessment, inappropriate pathway (eg, wrong algorithm) and inadequate attention to social circumstances. These resulted in missed, inaccurate or delayed diagnoses, underestimation of severity or urgency, delayed referral, incorrect or delayed treatment, poor safety netting and inadequate follow-up. Patients with complex pre-existing conditions, cardiac or abdominal emergencies, vague or generalised symptoms, safeguarding issues, failure to respond to previous treatment or difficulty communicating seemed especially vulnerable. General practices were facing resource constraints, understaffing and high demand. Triage and care pathways were complex, hard to navigate and involved multiple staff. In this context, patient safety often depended on individual staff taking initiative, speaking up or personalising solutions.

Conclusion While safety incidents are extremely rare in remote primary care, deaths and serious harms have resulted. We offer suggestions for patient, staff and system-level mitigations.

Primary care
Diagnostic errors
Safety culture
Qualitative research
Prehospital care

Data availability statement

Data are available upon reasonable request. Details of real safety incidents are not available for patient confidentiality reasons. Requests for data on other aspects of the study from other researchers will be considered.

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/ .

https://doi.org/10.1136/bmjqs-2023-016674

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WHAT IS ALREADY KNOWN ON THIS TOPIC

Safety incidents are extremely rare in primary care but they do happen. Concerns have been raised about the safety of remote triage and remote consultations.

WHAT THIS STUDY ADDS

Rare safety incidents (involving death or serious harm) in remote encounters can be traced back to various clinical, communicative, technical and logistical causes. Telephone and video encounters in general practice are occurring in a high-risk (extremely busy and sometimes understaffed) context in which remote workflows may not be optimised. Front-line staff use creativity and judgement to help make care safer.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

As remote modalities become mainstreamed in primary care, staff should be trained in the upstream causes of safety incidents and how they can be mitigated. The subtle and creative ways in which front-line staff already contribute to safety culture should be recognised and supported.

Introduction

In early 2020, remote triage and remote consultations (together, ‘remote encounters’), in which the patient is in a different physical location from the clinician or support staff member, were rapidly expanded as a safety measure in many countries because they eliminated the risk of transmitting COVID-19. 1–4 But by mid-2021, remote encounters had begun to be depicted as potentially unsafe because they had come to be associated with stories of patient harm, including avoidable deaths and missed cancers. 5–8

Providing triage and clinical care remotely is sometimes depicted as a partial solution to the system pressures facing primary healthcare in many countries, 9–11 including rising levels of need or demand, the ongoing impact of the COVID-19 pandemic and workforce challenges (especially short-term or longer-term understaffing). In this context, remote encounters may be an important component of a mixed-modality health service when used appropriately alongside in-person contacts. 12 13 But this begs the question of what ‘appropriate’ and ‘safe’ use of remote modalities in a primary care context is. Safety incidents (defined as ‘any unintended or unexpected incident which could have, or did, lead to harm for one or more patients receiving healthcare 14 ’) are extremely rare in primary healthcare consultations generally, 15 16 in-hours general practice telephone triage 17 and out-of-hours primary care. 18 But the recent widespread expansion of remote triage and remote consulting in primary care means that a wider range of patients and conditions are managed remotely, making it imperative to re-examine where the risks lie.

Theoretical approaches to safety in healthcare fall broadly into two traditions. 19 ‘Safety I’ studies focus on what went wrong. Incident reports are analysed to identify ‘root causes’ and ‘safety gaps’, and recommendations are made to reduce the chance that further similar incidents will happen in the future. 20 Such studies, undertaken in isolation, tend to lead to a tightening of rules, procedures and protocols. ‘Safety II’ studies focus on why, most of the time, things do not go wrong. Ethnography and other qualitative methods are employed to study how humans respond creatively to unique and unforeseen situations, thereby preventing safety incidents most of the time. 19 Such studies tend to show that actions which achieve safety are highly context specific, may entail judiciously breaking the rules and require human qualities such as courage, initiative and adaptability. 21 Few previous studies have combined both approaches.

In this study, we aimed to use Safety I methods to learn why safety incidents occur (although rarely) in remote primary care encounters and also apply Safety II methods to examine the kinds of creative actions taken by front-line staff that contribute to a safety culture and thereby prevent such incidents.

Study design and origins

Multimethod qualitative study across UK, including incident analysis, longitudinal ethnography and national stakeholder interviews.

The idea for this safety study began during a longitudinal ethnographic study of 12 general practices across England, Scotland and Wales as they introduced (and, in some cases, subsequently withdrew) various remote and digital modalities. Practices were selected for maximum diversity in geographical location, population served and digital maturity and followed from mid-2021 to end 2023 using staff and patient interviews and in-person ethnographic visits. The study protocol, 22 baseline findings 23 and a training needs analysis 24 have been published. To provide context for our ethnography, we interviewed a sample of national stakeholders in remote and digital primary care, including out-of-hours providers running telephone-led services, and held four online multistakeholder workshops, one of which was on the theme of safety, for policymakers, clinicians, patients and other parties. Early data from this detailed qualitative work revealed staff and patient concerns about the safety of remote encounters but no actual examples of harm.

To explore the safety theme further, we decided to take a dual approach. First, following Safety I methodology for the study of rare harms, 20 we set out to identify and analyse a sample of safety incidents involving remote encounters. These were sourced from arm’s-length bodies (NHS England, NHS Resolution, Healthcare Safety Investigation Branch) and providers of healthcare at scale (health boards, integrated care systems and telephone advice services), since our own small sample had not identified any of these rare occurrences. Second, we extended our longitudinal ethnographic design to more explicitly incorporate Safety II methodology, 19 allowing us to examine safety culture and safety practices in our 12 participating general practices, especially the adaptive work done by staff to avert potential safety incidents.

Data sources and management

Table 1 summarises the data sources.

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Summary of data sources

The Safety I dataset (rows 2-5) consisted of 95 specific incident reports, including complaints submitted to the main arm’s-length NHS body in England, NHS England, between 2020 and 2023 (n=69), closed indemnity claims that had been submitted to a national indemnity body, NHS Resolution, between 2015 and 2023 (n=16), reports from an urgent care telephone service in Wales (NHS 111 Wales) between 2020 and 2023 (n=6) and a report on an investigation of telephone advice during the COVID-19 crisis between 2020 and 2022 7 (n=4). These 95 incidents were organised using Microsoft Excel spreadsheets.

The Safety II dataset (rows 6-10) consisted of extracts from fieldnotes, workshop transcripts and interviews collected over 2 years, stored and coded on NVivo qualitative software. These were identified by searching for text words and codes (e.g. ‘risk’, ‘safety’, ‘incident’) and by asking researchers-in-residence, who were closely familiar with practices, to highlight safety incidents involving harm and examples of safety-conscious work practices. This dataset included over 100 formal interviews and numerous on-the-job interviews with practice staff, plus interviews with a sample of 10 GP (general practitioner) trainers and 10 GP trainees (penultimate row of table 1 ) and with six clinical safety experts identified through purposive sampling from government, arm’s-length bodies and health boards (bottom row of table 1 ).

Data analysis

We analysed incident reports, interview data and ethnographic fieldnotes using thematic analysis as described by Braun and Clarke. 25 These authors define a theme as an important, broad pattern in a set of qualitative data, which can (where necessary) be further refined using coding.

Themes in the incident dataset were identified by five steps. First, two researchers (both medically qualified) read each source repeatedly to gain familiarity. Second, those researchers worked independently using Braun and Clarke’s criterion (‘whether it captures something important in relation to the overall research question’—p 82 25 ) to identify themes. Third, they discussed their initial interpretations with each other and resolved differences through discussion. Fourth, they extracted evidence from the data sources to illustrate and refine each theme. Finally, they presented their list of themes along with illustrative examples to the wider team. Cases used to illustrate themes were systematically fictionalised by changing age, randomly allocating gender and altering clinical details. 26 For example, an acute appendicitis could be changed to acute diverticulitis if the issue was a missed acute abdomen.

These safety themes were then used to sensitise us to seek relevant (confirming and disconfirming) material from our ethnographic and interview datasets. For example, the theme ‘poor communication’ (and subthemes such as ‘failure to seek further clarification’ within this) promoted us to look for examples in our stakeholder interviews of poor communication offered as a cause of safety incidents and examples in our ethnographic notes of good communication (including someone seeking clarification). We used these wider data to add nuance to the initial list of themes.

As a final sense-checking step, the draft findings from this study were shown to each of the six safety experts in our sample and refined in the light of their comments (in some cases, for example, they considered the case to have been overfictionalised, thereby losing key clinical messages; they also gave additional examples to illustrate some of the themes we had identified, which underlined the importance of those themes).

Overview of dataset

The dataset ( table 1 ) consisted of 95 incident reports (see fictionalised examples in box 1 ), plus approximately 400 pages of extracts from interviews, ethnographic fieldnotes and workshop discussions, including situated safety practices (see examples in box 2 ), plus strategic insights relating to policy, organisation and planning of services. Notably, almost all incidents related to telephone calls.

Examples of safety incidents involving death or serious harm in remote encounters

All these cases have been systematically fictionalised as explained in the text.

Case 1 (death)

A woman in her 70s experiencing sudden breathlessness called her GP (general practitioner) surgery. The receptionist answered the phone and informed her that she would place her on the doctor’s list for an emergency call-back. The receptionist was distracted by a patient in the waiting room and did not do so. The patient deteriorated and died at home that afternoon.—NHS Resolution case, pre-2020

Case 2 (death)

An elderly woman contacted her GP after a telephone contact with the out-of-hours service, where constipation had been diagnosed. The GP prescribed laxatives without seeing the patient. The patient self-presented to the emergency department (ED) the following day in obstruction secondary to an incarcerated hernia and died in the operating theatre.—NHS Resolution case, pre-2020

Case 3 (risk to vulnerable patients)

A daughter complained that her elderly father was unable to access his GP surgery as he could not navigate the online triage system. When he phoned the surgery directly, he was directed back to the online system and told to get a relative to complete the form for him.—Complaint to NHS England, 2021

Case 4 (harm)

A woman in her first pregnancy at 28 weeks’ gestation experiencing urinary incontinence called NHS 111. She was taken down by a ‘urinary problems’ algorithm. Both the call handler and the subsequent clinician failed to recognise that she had experienced premature rupture of membranes. She later presented to the maternity department in active labour, and the opportunity to give early steroids to the premature infant was missed.—NHS Resolution case, pre-2020

Case 5 (death)

A doctor called about a 16-year-old girl with lethargy, shaking, fever and poor oral intake who had been unwell for 5 days. The doctor spoke to her older sister and advised that the child had likely glandular fever and should rest. When the parents arrived home, they called an ambulance but the child died of sepsis in the ED.—NHS Resolution case, pre-2020

Case 6 (death)

A 40-year-old woman, 6 weeks after caesarean section, contacted her GP due to shortness of breath, increased heart rate and dry cough. She was advised to get a COVID test and to dial 111 if she developed a productive cough, fever or pain. The following day she collapsed and died at home. The postmortem revealed a large pulmonary embolus. On reviewing the case, her GP surgery felt that had she been seen face to face, her oxygen saturations would have been measured and may have led to suspicion of the diagnosis.—NHS Resolution case, 2020

Case 7 (death)

A son complained that his father with diabetes and chronic kidney disease did not receive any in-person appointments over a period of 1 year. His father went on to die following a leg amputation arising from a complication of his diabetes.—Complaint to NHS England, 2021

Case 8 (death)

A 73-year-old diabetic woman with throat pain and fatigue called the surgery. She was diagnosed with a viral illness and given self-care advice. Over the next few days, she developed worsening breathlessness and was advised to do a COVID test and was given a pulse oximeter. She was found dead at home 4 days later. Postmortem found a blocked coronary artery and a large amount of pulmonary oedema. The cause of death was myocardial infarction and heart failure.—NHS Resolution case, pre-2020

Case 9 (harm)

A patient with a history of successfully treated cervical cancer developed vaginal bleeding. A diagnosis of fibroids was made and the patient received routine care by telephone over the next few months until a scan revealed a local recurrence of the original cancer.—Complaint to NHS England, 2020

Case 10 (death)

A 65-year-old female smoker with chronic cough and breathlessness presented to her GP. She was diagnosed with chronic obstructive pulmonary disease (COPD) and monitored via telephone. She did not respond to inhalers or antibiotics but continued to receive telephone monitoring without further investigation. Her symptoms continued to worsen and she called an ambulance. In the ED, she was diagnosed with heart failure and died soon after.—Complaint to NHS England, 2021

Case 11 (harm)

A 30-year-old woman presented with intermittent episodes of severe dysuria over a period of 2 years. She was given repeated courses of antibiotics but no urine was sent for culture and she was not examined. After 4 months of symptoms, she saw a private GP and was diagnosed with genital herpes.—Complaint to NHS England, 2021

Case 12 (harm)

There were repeated telephone consultations about a baby whose parents were concerned that the child was having a funny colour when feeding or crying. The 6-week check was done by telephone and at no stage was the child seen in person. Photos were sent in, but the child’s dark skin colour meant that cyanosis was not easily apparent to the reviewing clinician. The child was subsequently admitted by emergency ambulance where a significant congenital cardiac abnormality was found.—Complaint to NHS England, 2020 1

Case 13 (harm)

A 35-year-old woman in her third trimester of pregnancy had a telephone appointment with her GP about a breast lump. She was informed that this was likely due to antenatal breast changes and was not offered an in-person appointment. She attended after delivery and was referred to a breast clinic where a cancer was diagnosed.—Complaint to NHS England, 2020

Case 14 (harm)

A 63-year-old woman with a variety of physical symptoms including diarrhoea, hip girdle pain, palpitations, light-headedness and insomnia called her surgery on multiple occasions. She was told her symptoms were likely due to anxiety, but was diagnosed with stage 4 ovarian cancer and died soon after.—Complaint to NHS England, 2021

Case 15 (death)

A man with COPD with worsening shortness of breath called his GP surgery. The staff asked him if it was an emergency, and when the patient said no, scheduled him for 2 weeks later. The patient died before the appointment.—Complaint to NHS England, 2021

Examples of safety practices

Case 16 (safety incident averted by switching to video call for a sick child)

‘I’ve remembered one father that called up. Really didn’t seem to be too concerned. And was very much under-playing it and then when I did a video call, you know this child… had intercostal recession… looked really, really poorly. And it was quite scary actually that, you know, you’d had the conversation and if you’d just listened to what Dad was saying, actually, you probably wouldn’t be concerned.’—GP (general practitioner) interview 2022

Case 17 (‘red flag’ spotted by support staff member)

A receptionist was processing routine ‘administrative’ encounters sent in by patients using AccuRx (text messaging software). She became concerned about a sick note renewal request from a patient with a mental health condition. The free text included a reference to feeling suicidal, so the receptionist moved the request to the ‘red’ (urgent call-back) list. In interviews with staff, it became apparent that there had recently been heated discussion in the practice about whether support staff were adding ‘too many’ patients to the red list. After discussing cases, the doctors concluded that it should be them, not the support staff, who should absorb the risk in uncertain cases. The receptionist said that they had been told: ‘if in doubt, put it down as urgent and then the duty doctor can make a decision.’—Ethnographic fieldnotes from general practice 2023

Case 18 (‘check-in’ phone call added on busy day)

A duty doctor was working through a very busy Monday morning ‘urgent’ list. One patient had acute abdominal pain, which would normally have triggered an in-person appointment, but there were no slots and hard decisions were being made. This patient had had the pain already for a week, so the doctor judged that the general rule of in-person examination could probably be over-ridden. But instead of simply allocating to a call-back, the doctor asked a support staff member to phone the patient, ask ‘are you OK to wait until tomorrow?’ and offer basic safety-netting advice.—Ethnographic fieldnotes from general practice 2023

Case 19 (receptionist advocating on behalf of ‘angry’ walk-in patient)

A young Afghan man with limited English walked into a GP surgery on a very busy day, ignoring the prevailing policy of ‘total triage’ (make contact by phone or online in the first instance). He indicated that he wanted a same-day in-person appointment for a problem he perceived as urgent. A heated exchange occurred with the first receptionist, and the patient accused her of ‘racism’. A second receptionist of non-white ethnicity herself noted the man’s distress and suspected that there may indeed be an urgent problem. She asked the first receptionist to leave the scene, saying she wanted to ‘have a chat’ with the patient (‘the colour of my skin probably calmed him down more than anything’). Through talking to the patient and looking through his record, she ascertained that he had an acute infection that likely needed prompt attention. She tried to ‘bend the rules’ and persuade the duty doctor to see the patient, conveying the clinical information but deliberately omitting the altercation. But the first receptionist complained to the doctor (‘he called us racists’) and the doctor decided that the patient would not therefore be offered a same-day appointment. The second receptionist challenged the doctor (‘that’s not a reason to block him from getting care’). At this point, the patient cried and the second receptionist also became upset (‘this must be serious, you know’). On this occasion, despite her advocacy the patient was not given an immediate appointment.—Ethnographic fieldnotes from general practice 2022

Case 20 (long-term condition nurse visits ‘unengaged’ patients at home)

An advanced nurse practitioner talks of two older patients, each with a long-term condition, who are ‘unengaged’ and lacking a telephone. In this practice, all long-term condition reviews are routinely done by phone. She reflects that some people ‘choose not to have avenues of communication’ (ie, are deliberately not contactable), and that there may be reasons for this (‘maybe health anxiety or just old’). She has, on occasion, ‘turned up’ unannounced at the patient’s home and asked to come in and do the review, including bloods and other tests. She reflects that while most patients engage well with the service, ‘half my job is these patients who don’t engage very well.’—Ethnographic fieldnotes from digitally advanced general practice 2022

Case 21 (doctor over-riding patient’s request for telephone prescribing)

A GP trainee described a case of a 53-year-old first-generation immigrant from Pakistan, a known smoker with hypertension and diabetes. He had booked a telephone call for vomiting and sinus pain. There was no interpreter available but the man spoke some English. He said he had awoken in the night with pain in his sinuses and vomiting. All he wanted was painkillers for his sinuses. The story did not quite make sense, and the man ‘sounded unwell’. The GP told him he needed to come in and be examined. The patient initially resisted but was persuaded to come in. When the GP went to call him in, the man was visibly unwell and lying down in the waiting room. When seen in person, he admitted to shoulder pain. The GP sent him to accident and emergency (A&E) where a myocardial infarction was diagnosed.—Trainee interview 2023

Below, we describe the main themes that were evident in the safety incidents: a challenging organisational and system context, poor communication compounded by remote modalities, limited clinical information, patient and carer burden and inadequate training. Many safety incidents illustrated multiple themes—for example, poor communication and failures of clinical assessment or judgement and patient complexity and system pressures. In the detailed findings below, we illustrate why safety incidents occasionally occur and why they are usually avoided.

The context for remote consultations: system and operational challenges

Introduction of remote triage and expansion of remote consultations in UK primary care occurred at a time of unprecedented system stress (an understaffed and chronically under-resourced primary care sector, attempting to cope with a pandemic). 23 Many organisations had insufficient telephone lines or call handlers, so patients struggled to access services (eg, half of all calls to the emergency COVID-19 telephone service in March 2020 were never answered 7 ). Most remote consultations were by telephone. 27

Our safety incident dataset included examples of technically complex access routes which patients found difficult or impossible to navigate (case 3 in box 1 ) and which required non-clinical staff to make clinical or clinically related judgements (cases 4 and 15). Our ethnographic dataset contained examples of inflexible application of triage rules (eg, no face-to-face consultation unless the patient had already had a telephone call), though in other practices these rules could be over-ridden by staff using their judgement or asking colleagues. Some practices had a high rate of failed telephone call-backs (patient unobtainable).

High demand, staff shortages and high turnover of clinical and support staff made the context for remote encounters inherently risky. Several incidents were linked to a busy staff member becoming distracted (case 1). Telephone consultations, which tend to be shorter, were sometimes used in the hope of improving efficiency. Some safety incidents suggested perfunctory and transactional telephone consultations, with flawed decisions made on the basis of incomplete information (eg, case 2).

Many practices had shifted—at least to some extent—from a demand-driven system (in which every request for an appointment was met) to a capacity-driven one (in which, if a set capacity was exceeded, patients were advised to seek care elsewhere), though the latter was often used flexibly rather than rigidly with an expectation that some patients would be ‘squeezed in’. In some practices, capacity limits had been introduced to respond to escalation of demand linked to overuse of triage templates (eg, to inquire about minor symptoms).

As a result of task redistribution and new staff roles, a single episode of care for one problem often involved multiple encounters or tasks distributed among clinical and non-clinical staff (often in different locations and sometimes also across in-hours and out-of-hours providers). Capacity constraints in onward services placed pressure on primary care to manage risk in the community, leading in some cases to failure to escalate care appropriately (case 6).

Some safety incidents were linked to organisational routines that had not adapted sufficiently to remote—for example, a prescription might be issued but (for various reasons) it could not be transmitted electronically to the pharmacy. Certain urgent referrals were delayed if the consultation occurred remotely (a referral for suspected colon cancer, for example, would not be accepted without a faecal immunochemical test).

Training, supervising and inducting staff was more difficult when many were working remotely. If teams saw each other less frequently, relationship-building encounters and ‘corridor’ conversations were reduced, with knock-on impacts for individual and team learning and patient care. Those supervising trainees or allied professionals reported loss of non-verbal cues (eg, more difficult to assess how confident or distressed the trainee was).

Clinical and support staff regularly used initiative and situated judgement to compensate for an overall lack of system resilience ( box 1 ). Many practices had introduced additional safety measures such as lists of patients who, while not obviously urgent, needed timely review by a clinician. Case 17 illustrates how a rule of thumb ‘if in doubt, put it down as urgent’ was introduced and then applied to avert a potentially serious mental health outcome. Case 18 illustrates how, in the context of insufficient in-person slots to accommodate all high-risk cases, a unique safety-netting measure was customised for a patient.

Poor communication is compounded by remote modalities

Because sense data (eg, sight, touch, smell) are missing, 28 remote consultations rely heavily on the history. Many safety incidents were characterised by insufficient or inaccurate information for various reasons. Sometimes (cases 2, 5, 6, 8, 9, 10 and 11), the telephone consultation was too short to do justice to the problem; the clinician asked few or no questions to build rapport, obtain a full history, probe the patient’s answers for additional detail, confirm or exclude associated symptoms and inquire about comorbidities and medication. Video provided some visual cues but these were often limited to head and shoulders, and photographs were sometimes of poor quality.

Cases 2, 4, 5 and 9 illustrate the dangers of relying on information provided by a third party (another staff member or a relative). A key omission (eg, in case 5) was failing to ask why the patient was unable to come to the phone or answer questions directly.

Some remote triage conversations were conducted using an inappropriate algorithm. In case 4, for example, the call handler accepted a pregnant patient’s assumption that leaking fluid was urine when the problem was actually ruptured membranes. The wrong pathway was selected; vital questions remained unasked; and a skewed history was passed to (and accepted by) the clinician. In case 8, the patient’s complaint of ‘throat’ pain was taken literally and led to ‘viral illness’ advice, overlooking a myocardial infarction.

The cases in box 2 illustrate how staff compensated for communication challenges. In case 16, a GP plays a hunch that a father’s account of his child’s asthma may be inaccurate and converts a phone encounter to video, revealing the child’s respiratory distress. In case 19 (an in-person encounter but relevant because the altercation occurs partly because remote triage is the default modality), one receptionist correctly surmises that the patient’s angry demeanour may indicate urgency and uses her initiative and interpersonal skills to obtain additional clinical information. In case 20, a long-term condition nurse develops a labour-intensive workaround to overcome her elderly patients’ ‘lack of engagement’. More generally, we observed numerous examples of staff using both formal tools (eg, see ‘red list’ in case 17) and informal measures (eg, corridor chats) to pass on what they believed to be crucial information.

Remote consulting can provide limited clinical information

Cases 2 and 4–14 all describe serious conditions including congenital cyanotic heart disease, pulmonary oedema, sepsis, cancer and diabetic foot which would likely have been readily diagnosed with an in-person examination. While patients often uploaded still images of skin lesions, these were not always of sufficient quality to make a confident diagnosis.

Several safety incidents involved clinicians assuming that a diagnosis made on a remote consultation was definitive rather than provisional. Especially when subsequent consultations were remote, such errors could become ingrained, leading to diagnostic overshadowing and missed or delayed diagnosis (cases 2, 8, 9, 10, 11 and 13). Patients with pre-existing conditions (especially if multiple or progressive), the very young and the elderly were particularly difficult to assess by telephone (cases 1, 2, 8, 10, 12 and 16). Clinical conditions difficult to assess remotely included possible cardiac pain (case 8), acute abdomen (case 2), breathing difficulties (cases 1, 6 and 10), vague and generalised symptoms (cases 5 and 14) and symptoms which progressed despite treatment (cases 9, 10 and 11). All these categories came up repeatedly in interviews and workshops as clinically risky.

Subtle aspects of the consultation which may have contributed to safety incidents in a telephone consultation included the inability to fully appraise the patient’s overall health and well-being (including indicators relevant to mental health such as affect, eye contact, personal hygiene and evidence of self-harm), general demeanour, level of agitation and concern, and clues such as walking speed and gait (cases 2, 5, 6, 7, 8, 10, 12 and 14). Our interviews included stories of missed cases of new-onset frailty and dementia in elderly patients assessed by telephone.

In most practices we studied, most long-term condition management was undertaken by telephone. This may be appropriate (and indeed welcome) when the patient is well and confident and a physical examination is not needed. But diabetes reviews, for example, require foot examination. Case 7 describes the deterioration and death of a patient with diabetes whose routine check-ups had been entirely by telephone. We also heard stories of delayed diagnosis of new diabetes in children when an initial telephone assessment failed to pick up lethargy, weight loss and smell of ketones, and point-of-care tests of blood or urine were not possible.

Nurses observed that remote consultations limit opportunities for demonstrating or checking the patient’s technique in using a device for monitoring or treating their condition such as an inhaler, oximeter or blood pressure machine.

Safety netting was inadequate in many remote safety incidents, even when provided by a clinician (cases 2, 5, 6, 8, 10, 12 and 13) but especially when conveyed by a non-clinician (case 15). Expert interviewees identified that making life-changing diagnoses remotely and starting patients on long-term medication without an in-person appointment was also risky.

Our ethnographic data showed that various measures were used to compensate for limited clinical information, including converting a phone consultation to video (case 16), asking the patient if they felt they could wait until an in-person slot was available (case 18), visiting the patient at home (case 20) and enacting a ‘if the history doesn’t make sense, bring the patient in for an in-person assessment’ rule of thumb (case 21). Out-of-hours providers added examples of rules of thumb that their services had developed over years of providing remote services, including ‘see a child face-to-face if the parent rings back’, ‘be cautious about third-party histories’, ‘visit a palliative care patient before starting a syringe driver’ and ‘do not assess abdominal pain remotely’.

Remote modalities place additional burdens on patients and carers

Given the greater importance of the history in remote consultations, patients who lacked the ability to communicate and respond in line with clinicians’ expectations were at a significant disadvantage. Several safety incidents were linked to patients’ limited fluency in the language and culture of the clinician or to specific vulnerabilities such as learning disability, cognitive impairment, hearing impairment or neurodiversity. Those with complex medical histories and comorbidities, and those with inadequate technical set-up and skills (case 3), faced additional challenges.

In many practices, in-person appointments were strictly limited according to more or less rigid triage criteria. Some patients were unable to answer the question ‘is this an emergency?’ correctly, leading to their condition being deprioritised (case 15). Some had learnt to ‘game’ the triage system (eg, online templates 29 ) by adapting their story to obtain the in-person appointment they felt they needed. This could create distrust and lead to inaccurate information on the patient record.

Our ethnographic dataset contained many examples of clinical and support staff using initiative to compensate for vulnerable patients’ inability or unwillingness to take on the additional burden of remote modalities (cases 19 and 20 in Box 2 30 31 ).

Training for remote encounters is often inadequate

Safety incidents highlighted various training needs for support staff members (eg, customer care skills, risks of making clinical judgements) and clinicians (eg, limitations of different modalities, risks of diagnostic overshadowing). Whereas out-of-hours providers gave thorough training to novice GPs (covering such things as attentiveness, rapport building, history taking, probing, attending to contextual cues and safety netting) in telephone consultations, 32–34 many in-hours clinicians had never been formally taught to consult by telephone. Case 17 illustrates how on-the-job training based on acknowledgement of contextual pressures and judicious use of rules of thumb may be very effective in averting safety incidents.

Statement of principal findings

An important overall finding from this study is that examples of deaths or serious harms associated with remote encounters in primary care were extremely rare, amounting to fewer than 100 despite an extensive search going back several years.

Analysis of these 95 safety incidents, drawn from multiple complementary sources, along with rich qualitative data from ethnography, interviews and workshops has clarified where the key risks lie in remote primary care. Remote triage and consultations expanded rapidly in the context of the COVID-19 crisis; they were occurring in the context of resource constraints, understaffing and high demand. Triage and care pathways were complex, multilayered and hard to navigate; some involved distributed work among multiple clinical and non-clinical staff. In some cases, multiple remote encounters preceded (and delayed) a needed in-person assessment.

In this high-risk context, safety incidents involving death or serious harm were rare, but those that occurred were characterised by a combination of inappropriate choice of modality, poor rapport building, inadequate information gathering, limited clinical assessment, inappropriate clinical pathway (eg, wrong algorithm) and failure to take account of social circumstances. These led to missed, inaccurate or delayed diagnoses, underestimation of severity or urgency, delayed referral, incorrect or delayed treatment, poor safety netting and inadequate follow-up. Patients with complex or multiple pre-existing conditions, cardiac or abdominal emergencies, vague or generalised symptoms, safeguarding issues and failure to respond to previous treatment, and those who (for any reason) had difficulty communicating, seemed particularly at risk.

Strengths and limitations of the study

The main strength of this study was that it combined the largest Safety I study undertaken to date of safety incidents in remote primary care (using datasets which have not previously been tapped for research), with a large, UK-wide ethnographic Safety II analysis of general practice as well as stakeholder interviews and workshops. Limitations of the safety incident sample (see final column in table 1 ) include that it was skewed towards very rare cases of death and serious harm, with relatively few opportunities for learning that did not result in serious harm. Most sources were retrospective and may have suffered from biases in documentation and recall. We also failed to obtain examples of safeguarding incidents (which would likely turn up in social care audits). While all cases involved a remote modality (or a patient who would not or could not use one), it is impossible to definitively attribute the harm to that modality.

Comparison with existing literature

This study has affirmed previous findings that processes, workflows and training in in-hours general practice have not adapted adequately to the booking, delivery and follow-up of remote consultations. 24 35 36 Safety issues can arise, for example, from how the remote consultation interfaces with other key practice routines (eg, for making urgent referrals for possible cancer). The sheer complexity and fragmentation of much remote and digital work underscores the findings from a systematic review of the importance of relational coordination (defined as ‘a mutually reinforcing process of communicating and relating for the purpose of task integration ’ (p 3) 37 ) and psychological safety (defined as ‘people’s perceptions of the consequences of taking interpersonal risks in a particular context such as a workplace ’ (p 23) 38 ) in building organisational resilience and assuring safety.

The additional workload and complexity associated with running remote appointments alongside in-person ones is cognitively demanding for staff and requires additional skills for which not all are adequately trained. 24 39 40 We have written separately about the loss of traditional continuity of care as primary care services become digitised, 41–43 and about the unmet training needs of both clinical and support staff for managing remote and digital encounters. 24

Our findings also resonate with research showing that remote modalities can interfere with communicative tasks such as rapport building, establishing a therapeutic relationship and identifying non-verbal cues such as tearfulness 35 36 44 ; that remote consultations tend to be shorter and feature less discussion, information gathering and safety netting 45–48 ; and that clinical assessment in remote encounters may be challenging, 27 49 50 especially when physical examination is needed. 35 36 51 These factors may rarely contribute to incorrect or delayed diagnoses, underestimation of the seriousness or urgency of a case, and failure to identify a deteriorating trajectory. 35 36 52–54

Even when systems seem adequate, patients may struggle to navigate them. 23 30 31 This finding aligns with an important recent review of cognitive load theory in the context of remote and digital health services: because such services are more cognitively demanding for patients, they may widen inequities of access. 55 Some patients lack navigating and negotiating skills, access to key technologies 13 36 or confidence in using them. 30 35 The remote encounter may require the patient to have a sophisticated understanding of access and cross-referral pathways, interpret their own symptoms (including making judgements about severity and urgency), obtain and use self-monitoring technologies (such as a blood pressure machine or oximeter) and convey these data in medically meaningful ways (eg, by completing algorithmic triage forms or via a telephone conversation). 30 56 Furthermore, the remote environment may afford fewer opportunities for holistically evaluating, supporting or safeguarding the vulnerable patient, leading to widening inequities. 13 35 57 Previous work has also shown that patients with pre-existing illness, complex comorbidities or high-risk states, 58 59 language non-concordance, 13 35 inability to describe their symptoms (eg, due to autism 60 ), extremes of age 61 and those with low health or system literacy 30 are more difficult to assess remotely.

Lessons for safer care

Many of the contributory factors to safety incidents in remote encounters have been suggested previously, 35 36 and align broadly with factors that explain safety incidents more generally. 53 62 63 This new study has systematically traced how upstream factors may, very rarely, combine to contribute to avoidable human tragedies—and also how primary care teams develop local safety practices and cultures to help avoid them. Our study provides some important messages for practices and policymakers.

First, remote encounters in general practice are mostly occurring in a system designed for in-person encounters, so processes and workflows may work less well.

Second, because the remote encounter depends more on history taking and dialogue, verbal communication is even more mission critical. Working remotely under system pressures and optimising verbal communication should both be priorities for staff training.

Third, the remote environment may increase existing inequities as patients’ various vulnerabilities (eg, extremes of age, poverty, language and literacy barriers, comorbidities) make remote communication and assessment more difficult. Our study has revealed impressive efforts from staff to overcome these inequities on an individual basis; some of these workarounds may become normalised and increase efficiency, but others are labour intensive and not scalable.

A final message from this study is that clinical assessment provides less information when a physical examination (and even a basic visual overview) is not possible. Hence, the remote consultation has a higher degree of inherent uncertainty. Even when processes have been optimised (eg, using high-quality triage to allocate modality), but especially when they have not, diagnoses and assessments of severity or urgency should be treated as more provisional and revisited accordingly. We have given examples in the Results section of how local adaptation and rule breaking bring flexibility into the system and may become normalised over time, leading to the creation of locally understood ‘rules of thumb’ which increase safety.

Overall, these findings underscore the need to share learning and develop guidance about the drivers of risk, how these play out in different kinds of remote encounters and how to develop and strengthen Safety II approaches to mitigate those risks. Table 2 shows proposed mitigations at staff, process and system levels, as well as a preliminary list of suggestions for patients, which could be refined with patient input using codesign methods. 64

Reducing safety incidents in remote primary care

Unanswered questions and future research

This study has helped explain where the key risks lie in remote primary care encounters, which in our dataset were almost all by telephone. It has revealed examples of how front-line staff create and maintain a safety culture, thereby helping to prevent such incidents. We suggest four key avenues for further research. First, additional ethnographic studies in general practice might extend these findings and focus on specific subquestions (eg, how practices identify, capture and learn from near-miss incidents). Second, ethnographic studies of out-of-hours services, which are mostly telephone by default, may reveal additional elements of safety culture from which in-hours general practice could learn. Third, the rise in asynchronous e-consultations (in which patients complete an online template and receive a response by email) raises questions about the safety of this new modality which could be explored in mixed-methods studies including quantitative analysis of what kinds of conditions these consultations cover and qualitative analysis of the content and dynamics of the interaction. Finally, our findings suggest that the safety of new clinically related ‘assistant’ roles in general practice should be urgently evaluated, especially when such staff are undertaking remote assessment or remote triage.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

Ethical approval was granted by the East Midlands—Leicester South Research Ethics Committee and UK Health Research Authority (September 2021, 21/EM/0170 and subsequent amendments). Access to the NHS Resolution dataset was obtained by secondment of the RP via honorary employment contract, where she worked with staff to de-identify and fictionalise relevant cases. The Remote by Default 2 study (referenced in main text) was co-designed by patients and lay people; it includes a diverse patient panel. Oversight was provided by an independent external advisory group with a lay chair and patient representation. A person with lived experience of a healthcare safety incident (NS) is a co-author on this paper and provided input to data analysis and writing up, especially the recommendations for patients in table 2 .

Acknowledgments

We thank the participating organisations for cooperating with this study and giving permission to use fictionalised safety incidents. We thank the participants in the ethnographic study (patients, practice staff, policymakers, other informants) who gave generously of their time and members of the study advisory group.

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X @dakinfrancesca, @trishgreenhalgh

Contributors RP led the Safety I analysis with support from AC. The Safety II analysis was part of a wider ethnographic study led by TG and SS, on which all other authors undertook fieldwork and contributed data. TG and RP wrote the paper, with all other authors contributing refinements. All authors checked and approved the final manuscript. RP is guarantor.

Funding Funding was from NIHR HS&DR (grant number 132807) (Remote by Default 2 study) and NIHR School for Primary Care Research (grant number 594) (ModCons study), plus an NIHR In-Practice Fellowship for RP.

Competing interests RP was National Professional Advisor, Care Quality Commission 2017–2022, where her role included investigation of safety issues.

Provenance and peer review Not commissioned; externally peer reviewed.

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Editorial Examining telehealth through the Institute of Medicine quality domains: unanswered questions and research agenda Timothy C Guetterman Lorraine R Buis BMJ Quality & Safety 2024; 33 552-555 Published Online First: 09 May 2024. doi: 10.1136/bmjqs-2023-016872

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Chapter 1. Introduction

Why an Open Access Textbook on Qualitative Research Methods?

What is Research?

What is Qualitative Research?

Examples of Qualitative Research

Example 1 : The End Game (ethnography + interviews)

Example 2: Racing for Innocence (Interviews + Content Analysis + Fictional Stories)

Example 3: Amplified Advantage (Mixed Methods: Survey Interviews + Focus Groups + Archives)

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Recommended Reading: Other Qualitative Research Textbooks

Patton’s Ten Suggestions for Doing Qualitative Research

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How to use and assess qualitative research methods

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Qualitative research methods: when to use them and how to judge them

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