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Research Guides

Ethnographic Case Studies

Jeannette Armstrong; Laura Boyle; Lindsay Herron; Brandon Locke; and Leslie Smith

Description

This research guide discusses ethnographic case study. While there is much debate over what, precisely, delimits a case study , the general consensus seems to be that ethnographic case studies differ from other types of case studies primarily in their focus, methodology, and duration. In essence, ethnographic case studies are case studies “employing ethnographic methods and focused on building arguments about cultural, group, or community formation or examining other sociocultural phenomena” (Schwandt & Gates, 2018, p. 344), typically with a long duration, per the demands of ethnographic work. In essence, ethnographic case studies are case studies “employing ethnographic methods and focused on building arguments about cultural, group, or community formation or examining other sociocultural phenomena” (Schwandt & Gates, 2018, p. 344), typically with a long duration, per the demands of ethnographic work. Indeed, in its very situatedness, ethnography has a “case study character” and is “intimately related” to case studies (Ó Rian, 2009, p. 291); though there is currently a move to extract ethnographic work from overly situated contexts and use extended case methods, “[e]thnographic research has long been synonymous with case studies, typically conceived of as grounded in the local and situated in specific, well-defined and self-contained social contexts” (Ó Rian, 2009, p. 290). Because ethnography, in practice, is often a kind of case study, it’s useful to consider ethnography and case studies each in their own right for a fuller picture of what ethnographic case study entails.

Ethnographic research is one approach under the larger umbrella of qualitative research. Methodologically, it is, “a theoretical, ethical, political, and at times moral orientation to research, which guides the decisions one makes, including choices about research methods” (Harrison, 2014, p. 225), that is at its crux “based upon sharing the time and space of those who one is studying” (Ó Rian, 2009, p. 291)–a situated, nuanced exploration seeking a thick description and drawing on methods such as observation and field notes. According to …an ethnography focuses on an entire culture-sharing group and attempts to develop a complex, complete description of the culture of the group. Creswell and Poth (2018), an ethnography focuses on an entire culture-sharing group and attempts to develop a complex, complete description of the culture of the group. In doing so, ethnographers look for patterns of behavior such as rituals or social behaviors, as well as how their ideas and beliefs are expressed through language, material activities, and actions (Creswell & Poth, 2018). Yin (2016)  suggests that ethnographies seek “to promote embedded research that fuses close-up observation, rigorous theory, and social critique. [Ethnographies foster] work that pays equal attention to the minutiae of experience, the cultural texture of social relations, and to the remote structural forces and power vectors that bear on them” (p. 69).

Case study research, meanwhile, is characterized as an approach “that facilitates exploration of a phenomenon within its context using a variety of data sources” (Baxter & Jack, 2008, p. 544). The aim of case studies is precise description of reconstruction of cases (Flick, 2015). The philosophical background is a qualitative, constructivist paradigm based on the claim that reality is socially constructed and can best be understood by exploring the tacit, i.e., experience-based, knowledge of individuals. There is some debate about how to define a The philosophical background is a qualitative, constructivist paradigm based on the claim that reality is socially constructed and can best be understood by exploring the tacit, i.e., experience-based, knowledge of individuals. “case” (e.g., Ó Rian, 2009), however. As Schwandt and Gates (2018) write, “[A] case is an instance, incident, or unit of something and can be anything–a person, an organization, an event, a decision, an action, a location”; it can be at the micro, meso, or macro level; it can be an empirical unit or a theoretical construct, specific or general; and in fact, “what the research or case object is a case of may not be known until most of the empirical research is completed” (p. 341). The two authors conclude that given the multifarious interpretations of what case study is, “[b]eyond positing that case study methodology has something to do with ‘in-depth’ investigation of a phenomenon . . . , it is a fool’s errand to pursue what is (or should be) truly called ‘case study’” (p. 343, 344).

Baxter, P., & Jack, S. (2008). Qualitative case study methodology: Study design and implementation for novice researchers. The Qualitative Report, 13 (4), 544-559.

Creswell, J. W., & Poth, C. N. (2018). Qualitative inquiry & research design: Choosing among five approaches (4th ed.). Los Angeles, CA: SAGE.

Flick, U. (2015). Introducing research methodology . Los Angeles, CA: SAGE.

Rian, S. (2009). Extending the ethnographic case study. In D. Byrne & C. C. Ragin (Eds.), The SAGE handbook of case-based methods (pp. 289–306). Thousand Oaks, CA: SAGE.

Schwandt, T. A., & Gates, E. F. (2018). Case study methodology. In N. K. Dezin & Y. S. Lincoln (Eds.), The SAGE handbook of qualitative research (5th ed.; pp. 341-358). Thousand Oaks, CA: SAGE.

Yin, R. K. (2016). Qualitative research from start to finish (2nd ed.). New York, NY: The Guilford Press.

Key Research Books and Articles on Ethnographic Case Study Methodology

Fusch, G. E., & Ness, L. R. (2017). How to conduct a mini-ethnographic case study: A guide for novice researchers. The Qualitative Report , 22 (3), 923-941.  Retrieved from https://nsuworks.nova.edu/tqr/vol22/iss3/16

In this how-to article, the authors present an argument for the use of a blended research design, namely the Ethnographic Case Study, for student researchers. To establish their point of view, the authors reiterate recognized research protocols, such as choosing a design that suits the research question to ensure data saturation. Additionally, they remind their reader that one must also consider the feasibility of the project in terms of time, energy, and financial constraints.

Before outlining the benefits and components of the Ethnographic Case Study approach, the authors provide detailed narratives of ethnographic, mini-ethnographic (sometimes referred to as a focused ethnography ), and case study research designs to orient the reader. Next, we are introduced to the term mini-ethnographic case-study design, which is defined as a blended design that is bound in time and space and uses qualitative ethnographic and case study collection methods. The benefits of such an approach permit simultaneous generation of theory and the study of that theory in practice, as it allows for the exploration of causality.

Ethnographic Case Study research shares many characteristics with its parent approaches.  For example, subjectivity and bias are present and must be addressed. Next, data triangulation is necessary to ensure the collected qualitative data and subsequent findings are valid and reliable. Data collection methods include direct observation, fieldwork, reflective journaling, informal or unstructured interviews, and focus groups. Finally, the authors discuss three limitations to the ethnographic case study. First, this design requires the researcher to be embedded, yet the duration of time may not be for as long when compared to full-scale ethnographic studies.  Second, since there are fewer participants, there should be a larger focus on rich data as opposed to thick data, or said differently, quality is valued over quantity. Third, the researcher must be aware that the end-goal is not transferability, but rather the objective is to gain a greater understanding of the culture of a particular group that is bound by space and time.

Gregory, E. & Ruby, M. (2010) The ‘insider/outsider’ dilemma of ethnography: Working with young children and their families in cross-cultural contexts. Journal of Early Childhood Research, 9 (2), 1-13. https://doi.org/10.1177/1476718X10387899

This article focuses on the dilemma of insider and outsider roles in ethnographic work. It challenges the notion that a researcher can be both an insider and an outsider at the same time. There is no insider/outsider status; it is one or the other–not both.

It is easy to make assumptions about one’s status as an insider. It is not uncommon for a researcher to assume that because one is working amongst his/her “own” people sharing a similar background, culture, or faith that she/he is an insider. Likewise, a researcher may assume that it will be easy to build rapport with a community with which he/she has commonalities; however, it is important to keep in mind that the person may be an insider but the researcher may not have this same status. When the person enters into the protective space of family or community as a researcher, it is similar to being an outsider. Being a researcher makes one different, regardless of the commonalities that are shared. It is not the researcher’s presumed status of “insider” or “outsider” that makes the difference; rather, researcher status is determined by the participants or community that is being studied. It is wise for researchers to understand that they are distinctively one of “them” as opposed to one of “us”. This is not to say that researchers cannot become an “insider” to some degree. But to assume insider status, regardless of the rationale, is wrong. Assuming common beliefs across cultures or insider status can lead to difficulties that could impact the scope or nature of the study.

In conclusion, regardless of the ethnographic design (e.g., realist ethnography, ethnographic case study, critical ethnography), it is important for the researcher to approach the study as an “outsider”. Although the outsider status may change over time, it essential to understand that when one enters a community as a researcher or becomes a researcher within a community, insider status must be earned and awarded according to the participants in the community.

Ó Rian, S. (2009). Extending the ethnographic case study. In D. Byrne & C. C. Ragin (Eds.), The SAGE handbook of case-based methods (pp. 289–306). Thousand Oaks, CA: SAGE.

In this chapter, Ó Rian valorizes the problems and potential hiding within the vagaries of ethnographic “case” boundaries, arguing that “whereas the fluid and multi-faceted aspects of the ethnographic case pose dilemmas for ethnographers, they can also become resources for ethnographers in exploring theoretical and empirical questions” (p. 292). Indeed, he views the idea of firm case boundaries as a weakness, as “definitions of the case will rule in and out certain social processes,” and suggests ethnography’s flexibility can deal with this problem well because it permits researchers to “question the boundaries of the case as the study proceeds,” leading to a “de- and re-construction of the case that . . . places ethnography at the centre of a resurgent contextualist paradigm of social inquiry . . . that is increasingly self-consciously exploring its own theoretical and methodological foundations” (p. 304). Most of the chapter delves into these possibilities for exploration, offering an insightful (if occasionally difficult to follow) perspective on how they have been proceeding.

The chapter offers considerations that might be particularly helpful to researchers undertaking ethnographic case studies who are struggling to connect their cases, so firmly rooted in a particular context and their own personal experiences and observations, to a bigger picture. Ó Rian elucidates the reflexive strategies various ethnographers have adopted as they’ve sought “[t]o achieve a link between context-specific data and meso- or macro-level generalizations,” categorizing these strategies into three “interlocking extensions of case study research” (p. 292): personal extensions (related to “the shaping of the boundaries of the case by the ethnographer’s location within the field and . . . how ethnographers can convey their personalized experiences and tacit learning to readers” [p. 292]), theoretical extensions (which bridge the gap between the situated worlds being explored and “the larger structures and processes that produced and shaped them” [p. 292]), and empirical extensions (“creative efforts to experiment with the empirical boundaries of the ethnographic case” [p. 292] by bringing in, for example, historical context, social networks, etc.). The crux of his argument is that ethnographic researchers have a prime opportunity to push against the boundaries of their context and “extend their cases across space, time and institutional structures and practices” so that the ethnographer is “multiply, if perhaps a bit uncomfortably, situated” (p. 304), and also to include an “emphasis on the ongoing process of theoretical sampling within the process of the ethnographic study, with close attention to be paid to the paths chosen and rejected, and the reasons for these decisions” (p. 304). These kinds of extensions offer an opportunity for theories to “be refined or reconstructed” as the researcher attempts to locate their personal experience within a broader framework, allowing “[t]he case study . . . to challenge and reconstruct the preferred theory” while also connecting the case to a larger body of work, particularly because theory “carries the accumulated knowledge of previous studies” (p. 296).

Ó Rian’s in-depth descriptions of how other researchers have varyingly handled these personal, theoretical, and empirical extensions might be a bit overwhelming to novice researchers but overall can offer a way to “locate their cases within broader social processes and not solely within their own personal trajectories” (p. 294)–while also helping to situate their reflections and extensions within a larger body of literature replete with researchers struggling with similar questions and concerns.

This chapter offers an  in-depth, generally accessible (but occasionally overwhelming) overview of case studies of all sorts and integrates an extensive review of relevant literature. The authors provide an informed perspective on various considerations and debates in the case study field (e.g., varying definitions of what a “case” is construed to be; interpretive vs. critical realist orientations; the relative benefits of and techniques involved in different types of approaches), helping novice researchers locate and better describe their own approach within the context of the field. The information is quite detailed and delves into a wide variety of case study types, suggesting this chapter might best be first skimmed as an initial introduction, followed by more careful readings of relevant sections and perusal of the key texts cited in the chapter. The breadth of this chapter makes it a helpful resource for anyone interested in case-study methodology.

The authors do not specifically explore ethnographic case studies as a separate type of case study. They do, however, briefly touch on this idea, locating ethnography within the interpretive orientation (comprising constructivist approaches offering “phenomenological attention to lived experience” [p. 344]). The authors also cite researchers who distinguish it due to its “[employing] ethnographic methods and focus on building arguments about cultural, group, or community formation or examining other sociocultural phenomena” (p. 344). Ethnographic case study is placed in contrast to case studies that use non-ethnographic methods (e.g., studies “relying perhaps on survey data and document analysis”) or that “are focused on ‘writing culture’” (p. 344).

Two aspects of this chapter are particularly useful for novice researchers. First, it is worth highlighting the authors’ discussion of varying definitions of what a “case” is, as it can provide an interesting reconceptualization of the purpose of the research and the reason for conducting it. The second noteworthy aspect is the authors’ detailed descriptions of the four main case study uses/designs ( descriptive, hypothesis generation or theory development, hypothesis and theory testing , and contributing to normative theory ), which the authors beautifully align with the respective purposes and methods of each type while also offering insight into relevant conversations in the field.

Further Readings

Moss, P. A., & Haertel, E. H. (2016). Engaging methodological pluralism. In D. H. Gitomer & C. A. Bell (Eds.), Handbook of Research on Teaching (pp. 127–247). Washington, DC: American Educational Research Association.

Simons, H. (2014). Case study research: In-depth understanding in context. In P. Leavy (Ed.), The Oxford handbook of qualitative research (pp. 455–470). Oxford, UK: Oxford University Press.

Recent Dissertations Using Ethnographic Case Study Methodology

Cozzolino, M. (2014). Global education, accountability, and 21st century skills: A case of curriculum innovation . Retrieved from ProQuest Dissertations & Theses Global. (Order Number 3648007)

This dissertation is self-described as an ethnographic case study of a small, public, suburban high school in Pennsylvania. In this study, the researcher investigates the school’s process of integrating global education into its curriculum by implementing a school-wide initiative (Global Studies Initiative or GSI) as well as a program of study (Global Studies Credential or GSC). Cozzolino asserts that her framework has been shaped by both social constructivism and critical/Freirean pedagogy. From the constructivist view, she views knowledge as constructed through social interaction, and thus she sought to understand the world in which the research participants work, learn, and experience large parts of their lives. It is here that she situates the first three research questions that entail looking at the the GSI and the GSC in terms of their features, rationales, and implementations. The fourth question involves understanding the students’ views and perceptions of the GSC and here the author takes up a critical and Freirean pedagogy to honor and hear the voices of the students themselves.

The study design is therefore an embedded single-case study in that it is bound by the place (Olympus High School) and by its population. Furthermore, it is also a case within a case, as it seeks to understand the students’ perspectives of the global programming. The case study is ethnographically rooted through the multiple ethnographic data sources such as participant-observations and a prolonged engagement at the research site. Cozzolino embedded herself in the research site over a five-year period and became an active and invested member of the school community, thereby establishing a sound rationale for an ethnographic case-study approach.

The author concludes that there were some competing priorities about the overall initiative from stakeholders inside and outside the school district. This resulted in a less than ideal implementation of the program of study across the curriculum. Nonetheless, the students who were enrolled in these courses reported it to be a worthwhile experience. While Cozzolino presents specific recommendations for the improvements at Olympus High, she also offers implications for several other groups. First, she provides advice for implementation to other educational institutions that aim to integrate a global focus into their curriculum. Next, she gives recommendations for local, state, and national policy changes. Finally, she gives suggestions for engaging all parties in fruitful discourse to achieve their ultimate goal of implementing a meaningful and valuable global education curriculum.

Hamman, L. (2018). Reframing the language separation debate: Language, identity, and  ideology in two-way immersion . Retrieved from ProQuest Dissertations & Theses Global. (Order Number 2089463322)

This study explored the issues of surrounding language separation in two-way immersion (TWI) classrooms. The author looked at how classroom language practices and teacher ideologies influenced the student experience and how the students’ understanding of what it means to be bilingual is influenced in a classroom that purports to be equitable in terms of language use.

The study is theoretically grounded in sociocultural, critical, and postcultural theories and adapted Lemke’s ecosocial system to conceptualize TWI classroom. Hamman also drew upon translanguaging theory and dynamic bilingualism to provide a framework for a more modern and nuanced perspective of bilingualism, bilingual learning, and bilingual students.

The author combined a single-case study approach with ethnographic methods to “engage in close analysis of classroom language use and the discursive negotiation of identities and ideologies, while situating these analyses within a rich understanding of the sociolinguistic context of this TWI classroom” (p. 78-79). She employed various ethnographic methods such as taking fieldnotes, conducting participant observations, interviewing, and memoing. The study is “bound” in that it takes place in one 2nd-grade classroom with one teacher and 18 students over the course of one year.

Hamman concludes that student perspectives on language separation should be considered, since this forced separation of language influenced how they thought of their developing bilingualism and identity as bilinguals. Furthermore, the study envisages a linguistic “middle ground” to strict separation that allows for appropriate and meaningful spaces for linguistic negotiation. Finally, this dissertation asserts that the strict separation of languages codifies a monoglossic ideology mindset and limits learners’ possibilities for learning and making connections across languages.

Kim, S. (2015). Korean migrant youth identity work in the transnational social field: A link between identity, transnationalism, and new media literacy . Retrieved from University of Missouri-St. Louis Institutional Repository Library. https://irl.umsl.edu/dissertation/158/

This doctoral dissertation takes an ethnographic case study approach to explore the identity formation of transnational Korean youth. The researcher, herself a Korean immigrant to the U.S. navigating complex identity processes, focuses on these research questions: “1) what are the contexts in which migrant youth negotiate their identities? 2) how do youth understand and negotiate their sense of belonging? 3) how do youth’s [sic] cultural and literacy practices inform and shape their identities? 3i) how do youth make use of transnational new media for their identity work? 3ii) how do literacy practices potentially shape their identities?” (p. 7).

Drawing on Leander and McKim (2013), the author conceptualizes her study as a “connective ethnography” (p. 36) encompassing multiple spaces, both digital and physical, in which “space” comprises a variety of relationships, instead of a more traditional ethnography bounded by physical space. The “case study” aspect, meanwhile, refers to the four specific participants in which she chose to focus. She chose Korean immigrants in St. Louis, in general, due to their mobility between the U.S. and Korea, their high use of digital communication and information technology, and their limited access to the cultural resources of Korea in a Midwestern city. From an initial 32 possible participants purposively selected, the researcher chose four focal participants based on their Korean ethnicity, biliteracy in Korean and English, age (between 11 and 19 years old), residence in the U.S. (for at least 2 years), and their use of digital communication technologies. Data sources included an initial screening survey, an identity map each participant created, informal recorded conversations, recorded interviews in either English or Korean, field notes from the researcher’s interactions with the youth in various settings (home, school, community centers), and “literacy documents” (evidence of literacy practices from participants’ school and home, emails to the researcher, or activities in digital spaces). She used social semiotic multimodal discourse analysis and what she describes as “grounded theory thematic analysis” to analyze the data.

This is a reflective, thoughtful, and interesting dissertation. The author carefully notes the relationship between the data sources and her research questions, specifically addresses steps she took to ensure the validity of the data (e.g., triangulation via multiple data sources and theoretical frameworks, member checks, and feedback from her professors and other researchers), and discloses her own positionalities and biases. Her discussion includes not only a clear thematic exploration of her findings but also offers specific practical suggestions for how her findings can be applied and extended in the classroom.

Internet Resources

Abalos-Gerard Gonzalez , L. (2011). Ethnographic research . Retrieved from https://www.slideshare.net/lanceabalos/ethnographic-research-2?from_action=save

Created by Lance Gerard G. Abalos, teacher at the Department of Education-Philippines, this SlideShare, Ethnographic Research , explains that, regardless of specific design, ethnographic research should be undertaken “without any priori hypothesis to avoid predetermining what is observed or that information is elicited from informants . . .hypotheses evolve out of the fieldwork itself” (slide 4). It is also suggested that researchers refer to individuals from whom information is gathered as ‘informants’ is preferred over the term ‘participants’ (slide 4).

According to Abalos, “It is not the data collection techniques that determine whether the study is ethnographic, but rather the ‘socio-cultural interpretation’ that sets it apart from other forms of qualitative inquiry” (slide 6). A social situation always has three components: a place, actors, and activities (slide 8) and it is the socio-cultural interpretation of the interactions of these three that is the focus of the ethnographic research.

Ethnographic questions should guide what the researcher sees, hears, and collects as data (slide 9). When writing the ethnography, it is essential to ‘bring the culture or group to life’ through the words and descriptions used to describe the place, actors, and activities.

Abalos describes three types of ethnographic designs:

• Realist Ethnographies : an objective account of the situation, written dispassionately from third-person point of view, reporting objectively on information learned from informants, containing closely edited quotations (slide 11-12).
• Ethnographic Case Studies : researchers focus on a program, event, or activity involving individuals rather than a group, looking for shared patterns that develop as a group as a result of the program, event, or activity (slide 13).
• Critical Ethnographies: incorporating a ‘critical’ approach that includes an advocacy perspective, researchers are interested in advocating against inequality and domination (slide 14).

As ethnographic data is analyzed, in any design (e.g., realist, case study, critical), there is a shift away from reporting the facts to making an interpretation of people and activities, determining how things work, and identifying the essential features in themes of the cultural setting (slide 22). “The ethnographer must present the description, themes, and interpretation within the context or setting of the culture-sharing group (slide 23).

Brehm, W. (2016, July 21). FreshEd #13 – Jane Kenway . Retrieved from http://www.freshedpodcast.com/tag/ethnography/ (EDXSymposium: New Frontiers in Comparative Education).

Jane Kenway is with the Australian Research Council and is an emeritus professor at Monash University in Melbourne, Australia. In this podcast, she explains “traditional’ forms of ethnography and multi-sited global ethnography, which are her area of specialization. She considers “traditional” ethnography to have three components: space, time, and mobility.

Insider/outsider stance is explained within the context of spatiality, community, and culture of space specific to ‘traditional” ethnography. Researchers are outsiders who are attempting to enter a space and become insiders, then leave the space once the research is completed. Research is conducted over an extended period of time in one place/space. As a result, researchers will get to know in an extremely intimate manner the ways of life of the community or group. “Work is supposed to be a temporality of slowness. In other words, you don’t rush around like a mad thing in a field, you just quietly and slowly immerse yourself in the field over this extended period of time and get to understand it, get to appreciate it bit by bit.” (minute 7:56).

“Traditional” ethnographers are not necessarily interested in mobility over time or exploring who enters and exits the site. Most ethnographers are only interested in the movement that occurs in the space that is being studied during the time that they are in the field. It is about looking at the roots of the space, not necessarily about looking at the movements into and out of the space.

Multi-sited global ethnography tries to look at the way bounded sites can be studied as unbounded and on the move, as opposed to staying still. It considers how certain things (e.g., things, ideas, people) are  followed as they move. The researcher moves between sites, studying change that is encountered in different sites. From this perspective, the interested lies in the connections between sites. Multiple sites with commonalities can also be studied at the onset, without the need to physically follow.

Paulus, T. M., Lester, J. N., & Dempster, P. G. (2014). Digital Tools for Qualitative Research. Los Angeles, CA: SAGE.

While this text is not solely about ethnographic case studies, it is rich with countless ideas for utilizing digital tools to aid in the multiple facets of qualitative research. In Chapter 5 of their text, entitled Generating Data, the authors dedicate a section to exploring Internet archives and multimedia data. They state that, “in addition to online communities, the Internet is rich with multimedia data such as professionally curated archives, ameteur-created YouTube and Vimeo videos and photo-sharing sites” (p. 81). They provide three specific examples, each explained below: The Internet Archive, CADENSA, and Britain’s BBC Archives.

The Internet Archive ( https://archive.org ) is a non-profit library of millions of free books, movies, software, music, websites, and more. The site also contains a variety of cultural artifacts that are easily available and downloadable. CADENSA ( http://cadensa.bl.uk ) is an online archive of the British Library Sound and Moving Image Catalogue. And finally, the BBC Archives ( http://www.bbc.co.uk/archive/ ) is a particularly useful site for researchers interested in reviewing documentary film and political speeches.

Wang, T. (2016, September). Tricia Wang: The human insights missing from big data. [Video file]. Retrieved from  https://www.ted.com/talks/tricia_wang_the_human_insights_missing_from_big_data

In this TED Talk, Tricia Wang discusses her ethnographic work with technology and advocates for the need to save a place for thick data as opposed to relying only on big data. She argues that while companies invest millions of dollars in generating big data because they assume it will efficiently provide all the answers, it routinely does not provide a good return on investment. Instead, companies are left without answers to the questions about consumer preferences and behaviors, which leaves them unprepared for market changes.

In turn, Wang coins the term thick data, which is described as “precious data from humans, like stories, emotions, and interactions that cannot be quantified” (Minute 11:50). Wang suggests that this thick data may only come from a small group of individuals, but it is an essential component that can provide insights that are different and valuable. As an example, while working for Nokia, her ethnographic experiences in China provided her with new understandings on the future demand for smartphones. However, her employer did not take her findings seriously, and as a result, they lost their foothold in the technology market. She posits that a blended approach to collecting and analyzing data (i.e. combining or integrating thick data analysis with big data analysis) allows for a better grasp on the whole picture and making informed decisions.

Her conclusions for a blended approach to data collection also have implications for blending ethnographic and case-study approaches. While Wang took more of an ethnographic approach to her research, one could envision what her work might have looked like if she had used an Ethnographic Case Study approach. Wang could have clearly defined the time and space boundaries of her various ethnographic experiences (e.g. as a street vendor, living in the slums, hanging out in internet cafés). This would have allowed her to infer causality through the generation of thick data with a small sample size for each location and bound by each group.

Ethnographic Case Studies Copyright © 2019 by Jeannette Armstrong; Laura Boyle; Lindsay Herron; Brandon Locke; and Leslie Smith is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License , except where otherwise noted.

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An Ethnographic Case Study Design

• First Online: 23 January 2020

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• Congjun Mu 2  

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This chapter justifies the selection of an ethnographic case study approach to investigate Chinese multilingual scholars’ experiences in writing for scholarly publication in English. Mixed methods—quantitative survey and qualitative semi-structured interviews—are used to elicit data exposing Chinese scholars’ attitude to the controversies discussed in the literature and their strategies to cope with the challenges they face in writing and publishing in English. An in-depth case analysis method with text-history analysis is introduced. The questionnaire design owes much to previous studies in ERPP research, a field that has developed rapidly in recent years and may continue to grow in the future. The procedures of semi-structured interviews and document collection are presented in detail in the interests of transparency, reliability, and validity of the research.

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Home » Education » Difference Between Case Study and Ethnography

Difference Between Case Study and Ethnography

Main difference – case study vs ethnography.

Case studies and ethnographies are two popular detailed, qualitative studies used in the field of social science . Although there are certain similarities between these two methods such as their holistic nature, and the extended time period, there are also some differences between the two. The main difference between case study and ethnography is their focus; ethnography aims to explore cultural phenomenon whereas case studies aim to describe the nature of phenomena through a detailed investigation of individual cases.

What is a Case Study

A case study is a detailed investigation of a single event, situation or an individual in order to explore and unearth complex issues. Yin (1984) defines case study as “an empirical inquiry that investigates a contemporary phenomenon within its real-life context; when the boundaries between phenomenon and context are not clearly evident; and in which multiple sources of evidence are used.” Although case studies are always associated with qualitative research, they can also be quantitative in nature. They are often used to explore community-based issued such as poverty, illiteracy, unemployment, prostitution, and drug addiction.

A successful case study is context-sensitive, holistic, systematic, layered and comprehensive. The process of a case study involves,

• Identifying and defining the research questions
• Selecting the cases and deciding techniques for data collection and analysis
• Collecting data in the field
• Evaluating and analysing the data
• Preparing the report

Data collection methods in a case study may involve interviews, observations, questionnaires, checklists, analysis of recorded data and opinionnaires. Case studies can also be divided into different categories. Exploratory, descriptive and explanatory case studies are three such categories.

Case studies are preferred by many researchers in the field of social sciences since they offer detailed and in-depth information about a particular phenomenon. However, it is difficult to use the data obtained from a case study to form generalisation since it only focuses on a single event or phenomenon.

Figure 1: Questionnaires are one method of data collection in a case study.

What is an Ethnography

Ethnography is a detailed and in-depth study of everyday life and practice. In other words, it is the systematic study of people and cultures. A researcher who is engaged in ethnography is known as an ethnographer . Ethnographers explore and study culture from an insider’s point of view (emic perspective).

Ethnography traditionally involved focusing on a bounded and a definable race, ethnicity or group of people; for example, study of a particular African tribe. However, modern ethnography also focus on different aspects of the contemporary social life.

Ethnographic research mainly involves field observations, i.e., observations of behaviour in a natural setting. The researchers have to spend a considerable amount of time inside a community in order to make such observations. Information about particular socio-cultural phenomena in a community is typically obtained from the members of that particular community. Participant observation and interviews are two of the main data collection methods in this type of studies. Ethnographic studies take a longer period of time than other types of research since it takes long-term involvement and observation to understand the attitudes, beliefs, and behaviours of a community.

Figure 2: Observation and participant interviews are main data collection methods in ethnography.

Definition 

Case Study: A case study is a detailed investigation of a single event, situation or an individual in order to explore and unearth complex issues.

Ethnography: An ethnography is the detailed and systematic study of people and cultures.

Case Study: Case studies focus on a single event, incident or individual.

Ethnography: Ethnography observes cultural phenomenon.

Case study: Case study intends to uncover the tacit knowledge of culture participants.

Ethnography: Ethnography aims to describe the nature of phenomena through detailed investigations of individual cases.

Data Collection Methods

Case Study: Case studies may use interviews, observations, questionnaires, checklists, analysis of recorded data and opinionnaires.

Ethnography: Ethnographic studies use participant observations and interviews.

Special Requirements

Case Study: The researcher does not have to live in a particular community.

Ethnography: The researcher has to spend a considerable amount time inside that particular community.

Conclusion 

Case study and ethnography may have some similarities; however, there is a considerable difference between case study and ethnography as explained above. The main difference between case study and ethnography lies in their intent and focus; case studies intend to uncover the tacit knowledge of culture participants whereas ethnographic studies intend to describe the nature of phenomena through detailed investigations of individual cases. There are also differences between them in terms of data collection and analyis. 

• Cohen, Arie. “Ethnography and case study: a comparative analysis.”  Academic Exchange Quarterly  7.3 (2003): 283-288.
• Yin, Robert. “Case study research. Beverly Hills.” (1984).

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Home » Ethnographic Research -Types, Methods and Guide

Ethnographic Research -Types, Methods and Guide

Table of Contents

Ethnographic Research

Definition:

Ethnographic research is a qualitative research method used to study and document the culture, behaviors, beliefs, and social interactions of a particular group of people. It involves direct observation and participation in the daily life and activities of the group being studied, often for an extended period of time.

Ethnographic Study

An ethnographic study is a research method that involves the detailed and systematic study of a particular group, culture, or community. Ethnographic studies seek to understand the beliefs, values, behaviors, and social dynamics of a group through direct observation and participation in their daily life.

Ethnographic Research vs Ethnographic Study

here’s a table comparing ethnographic study and ethnographic research:

While there are some differences between the two, they are similar in that they both use qualitative research methods to study a particular group, culture, or community. The main difference is that an ethnographic study involves the researcher spending an extended period of time within the community being studied in order to develop a deep understanding, while ethnographic research is focused on documenting and analyzing the culture, beliefs, behaviors, and social interactions of the group being studied.

Ethnographic Research Types

Ethnographic research can be divided into several types based on the focus of the study and the research objectives. Here are some common types of ethnographic research:

Classic Ethnography

This type of ethnographic research involves an extended period of observation and interaction with a particular community or group. The researcher aims to understand the community’s culture, beliefs, practices, and social structure by immersing themselves in the community’s daily life.

Autoethnography

Autoethnography involves the researcher using their own personal experiences to gain insights into a particular community or culture. The researcher may use personal narratives, diaries, or other forms of self-reflection to explore the ways in which their own experiences relate to the culture being studied.

Participatory Action Research

Participatory action research involves the researcher working collaboratively with members of a particular community or group to identify and address social issues affecting the community. The researcher aims to empower community members to take an active role in the research process and to use the findings to effect positive change.

Virtual Ethnography

Virtual ethnography involves the use of online or digital media to study a particular community or culture. The researcher may use social media, online forums, or other digital platforms to observe and interact with the group being studied.

Critical Ethnography

Critical ethnography aims to expose power imbalances and social inequalities within a particular community or culture. The researcher may use their observations to critique dominant cultural narratives or to identify opportunities for social change.

Ethnographic Research Methods

Some common ethnographic research methods include:

Participant Observation

This involves the researcher directly observing and participating in the daily life and activities of the group being studied. This technique helps the researcher gain an in-depth understanding of the group’s behavior, culture, and social dynamics.

Ethnographic researchers use interviews to gather information about the group’s beliefs, values, and practices. Interviews may be formal or informal and can be conducted one-on-one or in group settings.

Surveys can be used to collect data on specific topics, such as attitudes towards a particular issue or behavior patterns. Ethnographic researchers may use surveys as a way to gather quantitative data in addition to qualitative data.

Document Analysis

This involves analyzing written or visual documents produced by the group being studied, such as newspapers, photographs, or social media posts. Document analysis can provide insight into the group’s values, beliefs, and practices.

Field Notes

Ethnographic researchers keep detailed field notes of their observations and interactions with the group being studied. These notes help the researcher organize their thoughts and observations and can be used to analyze the data collected.

Focus Groups

Focus groups are group interviews that allow the researcher to gather information from multiple people at once. This technique can be useful for exploring shared beliefs or experiences within the group being studied.

Ethnographic Research Data Analysis Methods

Ethnographic research data analysis methods involve analyzing qualitative data collected from observations, interviews, and other sources in order to identify patterns, themes, and insights related to the research question.

Here are some common data analysis methods used in ethnographic research:

Content Analysis

This involves systematically coding and categorizing the data collected from field notes, interviews, and other sources. The researcher identifies recurring themes, patterns, and categories in the data and assigns codes or labels to each one.

Narrative Analysis

This involves analyzing the stories and narratives collected from participants in order to understand how they construct and make sense of their experiences. The researcher looks for common themes, plot structures, and rhetorical strategies used by participants.

Discourse Analysis

This involves analyzing the language and communication practices of the group being studied in order to understand how they construct and reproduce social norms and cultural meanings. The researcher looks for patterns in the use of language, including metaphors, idioms, and other linguistic devices.

Comparative Analysis

This involves comparing data collected from different groups or communities in order to identify similarities and differences in their cultures, behaviors, and social structures. The researcher may use this analysis to generate hypotheses about why these differences exist and what factors may be contributing to them.

Grounded Theory

This involves developing a theoretical framework based on the data collected during the research process. The researcher identifies patterns and themes in the data and uses these to develop a theory that explains the social phenomena being studied.

How to Conduct Ethnographic Research

To conduct ethnographic research, follow these general steps:

• Choose a Research Question: Identify a research question that you want to explore. It should be focused and specific, but also open-ended to allow for flexibility and exploration.
• Select a research site: Choose a site or group that is relevant to your research question. This could be a workplace, a community, a social movement, or any other social setting where you can observe and interact with people.
• Obtain ethical clearance: Obtain ethical clearance from your institution or organization before beginning your research. This involves ensuring that your research is conducted in an ethical and responsible manner, and that the privacy and confidentiality of participants are protected.
• Conduct observations: Observe the people in your research site and take detailed notes. This involves being present and engaged in the social setting, participating in activities, and taking note of the behaviors, interactions, and social norms that you observe.
• Conduct interviews : Conduct interviews with people in the research site to gain deeper insights into their experiences, perspectives, and beliefs. This could involve structured or semi-structured interviews, focus groups, or other forms of data collection.
• Analyze data: Analyze the data that you have collected, looking for themes and patterns that emerge. This involves immersing yourself in the data and interpreting it within the social and cultural context of the research site.
• Write up findings: Write up your findings in a clear and concise manner, using quotes and examples to illustrate your key points. This may involve creating narratives, tables, or other visual representations of your findings.
• Reflect on your process: Reflect on your process and methods, thinking about what worked well and what could be improved for future research.

When to Use Ethnographic Research

Here are some situations where ethnographic research may be particularly appropriate:

• When exploring a new topic: Ethnographic research can be useful when exploring a topic that has not been well-studied before. By engaging with members of a particular group or community, researchers can gain insights into their experiences and perspectives that may not be visible from other research methods.
• When studying cultural practices: Ethnographic research is particularly useful when studying cultural practices and beliefs. By immersing themselves in the cultural context being studied, researchers can gain a deeper understanding of the ways in which cultural practices are enacted, maintained, and transmitted.
• When studying complex social phenomena: Ethnographic research can be useful when studying complex social phenomena that cannot be easily understood through quantitative methods. By observing social interactions and behaviors, researchers can gain insights into the ways in which social norms and structures are created and maintained.
• When studying marginalized communities: Ethnographic research can be particularly useful when studying marginalized communities, as it allows researchers to give voice to members of these communities and understand their experiences and perspectives.

Overall, ethnographic research can be a useful research approach when the goal is to gain a deep understanding of a particular group or community and their cultural practices, beliefs, and experiences. It is a flexible and adaptable research method that can be used in a variety of research contexts.

Applications of Ethnographic Research

Ethnographic research has many applications across a wide range of fields and disciplines. Some of the key applications of ethnographic research include:

• Informing policy and practice: Ethnographic research can provide valuable insights into the experiences and perspectives of marginalized or underrepresented groups, which can inform policy and practice in fields such as health care, education, and social services.
• Developing theories and concepts: Ethnographic research can contribute to the development of theories and concepts in social and cultural anthropology, sociology, and other disciplines, by providing detailed and nuanced accounts of social and cultural phenomena.
• Improving product design and marketing: Ethnographic research can be used to understand consumer behavior and preferences, which can inform the design and marketing of products and services.
• Studying workplace culture: Ethnographic research can provide insights into the norms, values, and practices of organizations, which can inform efforts to improve workplace culture and employee satisfaction.
• Examining social movements: Ethnographic research can be used to study the practices, beliefs, and experiences of social movements, which can inform efforts to understand and address social and political issues.
• Studying healthcare practices: Ethnographic research can provide insights into healthcare practices and patient experiences, which can inform efforts to improve healthcare delivery and patient outcomes.

Examples of Ethnographic Research

Here are some real-time examples of ethnographic research:

• Anthropological study of a remote indigenous tribe: Anthropologists often use ethnographic research to study remote indigenous tribes and gain insights into their culture, beliefs, and practices. For example, an anthropologist may live with a tribe for an extended period of time, observing and participating in their daily activities, and conducting interviews with members of the community.
• Study of workplace culture: Ethnographic research can be useful in studying workplace culture and understanding the dynamics of the organization. For example, an ethnographer may observe and interview employees in a particular department or team to gain insights into their work practices, communication styles, and social dynamics.
• Study of consumer behavior: Ethnographic research can be useful in studying consumer behavior and understanding how people interact with products and services. For example, an ethnographer may observe and interview consumers as they use a particular product, such as a new smartphone or fitness tracker, to gain insights into their behaviors and preferences.
• Study of health care practices: Ethnographic research can be useful in studying health care practices and understanding how patients and providers interact within the health care system. For example, an ethnographer may observe and interview patients and providers in a hospital or clinic to gain insights into their experiences and perspectives.
• Study of social movements: Ethnographic research can be useful in studying social movements and understanding how they emerge and evolve over time. For example, an ethnographer may observe and interview participants in a protest movement to gain insights into their motivations and strategies.

Purpose of Ethnographic Research

The purpose of ethnographic research is to provide an in-depth understanding of a particular group or community, including their cultural practices, beliefs, and experiences. This research approach is particularly useful when the research question is exploratory and the goal is to generate new insights and understandings. Ethnographic research seeks to understand the experiences, perspectives, and behaviors of the participants in their natural setting, without imposing the researcher’s own biases or preconceptions.

Ethnographic research can be used to study a wide range of topics, including social movements, workplace culture, consumer behavior, and health care practices, among others. The researcher aims to understand the social and cultural context of the group or community being studied, and to generate new insights and understandings that can inform future research, policy, and practice.

Overall, the purpose of ethnographic research is to gain a deep understanding of a particular group or community, with the goal of generating new insights and understandings that can inform future research, policy, and practice. Ethnographic research can be a valuable research approach in many different contexts, particularly when the goal is to gain a rich, contextualized understanding of social and cultural phenomena.

Advantages of Ethnographic Research

Ethnographic research has several advantages that make it a valuable research approach in many different fields. Here are some of the advantages of ethnographic research:

• Provides in-depth and detailed information: Ethnographic research involves direct observation of the group or community being studied, which allows researchers to gain a detailed and in-depth understanding of their beliefs, practices, and experiences. This type of information cannot be obtained through other research methods.
• Offers a unique perspective: Ethnographic research allows researchers to see the world from the perspective of the group or community being studied. This can provide unique insights into the ways in which different cultural practices and beliefs are constructed and maintained.
• Promotes cultural understanding: Ethnographic research can help to promote cultural understanding and reduce stereotypes by providing a more nuanced and accurate picture of different cultures and communities.
• Allows for flexibility: Ethnographic research is a flexible research approach that can be adapted to fit different research contexts and questions. Researchers can adjust their methods based on the needs of the group being studied and the research goals.
• Generates rich and diverse data: Ethnographic research generates rich and diverse data through a combination of observation, interviews, and other methods. This allows researchers to analyze different aspects of the group or community being studied and identify patterns and themes in the data.
• Supports theory development: Ethnographic research can support theory development by providing empirical data that can be used to test and refine theoretical frameworks.

Limitations of Ethnographic Research

Ethnographic research has several limitations that researchers should consider when selecting this research approach. Here are some of the limitations of ethnographic research:

• Limited generalizability: Ethnographic research typically involves studying a small and specific group or community, which limits the generalizability of the findings to other contexts or populations.
• Time-consuming: Ethnographic research is a time-consuming process that requires a significant investment of time and resources. Researchers must spend time observing and interacting with the group being studied, which may not be feasible in all research contexts.
• Subjectivity: Ethnographic research relies on the researcher’s interpretation and analysis of the data collected, which may introduce subjective bias into the research findings.
• Limited control: Ethnographic research involves studying a group or community in their natural setting, which limits the researcher’s control over the research context and the behavior of the participants.
• Ethical concerns: Ethnographic research can raise ethical concerns, particularly when studying marginalized or vulnerable populations. Researchers must be careful to ensure that they do not harm or exploit the participants in the research process.
• Limited quantitative data: Ethnographic research typically generates qualitative data, which may limit the types of analysis that can be conducted and the types of conclusions that can be drawn.

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Potential and limitations of digital ethnographic research: A case study on a web community

Giuseppe masullo.

1 Department of Human Sciences, Philosophy and Education, University of Salerno, Fisciano, Italy

Marianna Coppola

2 Department of Political and Communication Sciences, University of Salerno, Fisciano, Italy

Associated Data

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author.

Introduction

This work aims at transposing ethnographic research into digital contexts to probe its potential and limitations in a specific field of study: that of sexuality, particularly suited to ethnographic exploration. We chose as our case study a web community of Italian asexual people. As we shall see, this allowed us to simultaneously explore both the various techniques called into play in digital ethnography and the digital as a specific sphere within which sexuality takes on a very peculiar meaning. Digital sociality is paramount for the definition of imaginaries, meanings, and practices that could not be explored elsewhere. This is due to the implicit characteristics of the population studied, which does not find corresponding physical spaces of aggregation.

The paper will present the research design using this specific case study to address some of the typical dilemmas that researchers face when following the digital ethnographic approach and will explore the research results as an example of the kind of analysis available with the information and data collected through this method.

Results and discussion

The conclusions will attempt to briefly outline the shortfalls and advantages of this method, considering its application to this specific field of study.

Among the social research methods, ethnography is one of the most comprehensive tools available to researchers to reconstruct the visions, perspectives, imaginaries, beliefs, values, and practices that underpin a given culture (Masullo et al., 2020 ). It is no coincidence that many manuals on social research methods and techniques consider the ethnographic approach to be among the most representative of a “specific” way of doing research. Ethnography also has the merit of successfully combining three procedures that may not simultaneously come into play in research inspired by the interpretative tradition, namely: observing, questioning, and reading (Corbetta, 2005 ). In ethnographic research, researchers immerse themselves fully in their field of research—and, in some cases, are themselves part of it as members of the community investigated (auto-ethnography). In this type of study, all the senses are put to the test by the objective of the investigation. The choice of such an approach is not neutral and implies upstream decisions that are articulated along three planes: ontological, epistemological, and methodological. The ontological one refers to a reality understood as a social construction of meaning. The epistemological relates to the relationship between researchers and the object of the research. Finally, the methodological one concerns a multi-method approach involving the use of different techniques of information-gathering: observing (participant observation), questioning (the interview), and reading (triangulation with secondary data sources).

This work aims at transposing ethnographic research into digital contexts to probe its potential and limitations in a specific field of study: that of sexuality, particularly suited to ethnographic exploration (Delli Paoli, 2022 ). We chose as our case study a web community of Italian asexual people. As we shall see, this allowed us to simultaneously explore both the various techniques called into play in digital ethnography and the digital as a specific sphere within which sexuality takes on a very peculiar meaning. Digital sociality is paramount for the definition of imaginaries, meanings, and practices that could not be explored elsewhere. This is due to the implicit characteristics of the population studied, which does not find corresponding physical spaces of aggregation.

The first section of the paper will detail some theoretical aspects relating to the digital ethnography approach, analyzing the similarities and differences with the traditional ethnographic approach, followed by a description of the community under investigation (asexual people). We will highlight the processes that lead this sexual minority to consider the digital environment as the only place in which to self-define and express themselves. The second section of the paper will present the research design using this specific case study to address some of the typical dilemmas that researchers face when following the digital ethnographic approach. The third section will explore the research results as an example of the kind of analysis available with the information and data collected through this method. The conclusions will attempt to briefly outline the shortfalls and advantages of this method, considering its application to this specific field of study.

The digital ethnographic approach: Similarities and differences with the traditional ethnographic approach

Born in recent years as a transposition of the classical ethnographic approach into the digital environment, digital ethnography is in some respects still an unexplored field currently attracting young as well as more experienced scholars (Masullo, 2020 ). Its transversal pull can be ascribed to the fact that, though retaining many of its original features (directly linked to the hermeneutic sociological tradition), its application to the digital environment and the interpretative and methodological challenges it entails bring out new potential. The methodological literature on this approach is not yet systematic, as shown by the plurality of terminological labels attributed to it. Some of these, mainly used in the sociological field, frame this approach in the tradition of digital sociology and digital methods and thus speak of “digital ethnography” (Murthy, 2008 ); others, particularly in marketing, refer to the importance of the network and thus define it as “netnography” (Kozinets, 2002 , 2010 , 2015 ) 1 .

The new information and communication technologies greatly affect many areas of people's life and, therefore, many processes at the heart of the sociological investigation. Focusing on micro-sociological aspects and everyday life, platforms and new communication tools have engendered for and in individuals a new way of conceiving themselves and their reality. They broadened their social and collective horizons and their way of meeting and interacting with others (Masullo and Addeo, 2021 ). The pervasiveness of technology and the ubiquity determined by the so-called “internet of things” configure new realities in which some juxtapositions are irrelevant and no longer explicative—for example, online/offline, virtual/real, material/immaterial (Garcia et al., 2009 ; Beneito-Montagut, 2011 ; Scaramuzzino, 2012 ). The normative and value references connected to social action no longer relate only to a precise sphere delimited in space and time but expand through the subjects' ability to surf the net and take full advantage of all the potential (informative, communicative, and relational) offered therein. In the face of the current expansion of the web society, the perspectives of ethnographic research are expanding in tandem with the digital world. Concerning the objects of study, we can distinguish between the exploration of classic sociological objects of study and how they can be rethought in the digital sphere and through digitisation, or the exploration of natively digital phenomena, which arise directly within the web. In the latter case, the web becomes both the field in which the observation takes place and the context in which the phenomenon itself originated. Initially, the ethnographic approach applied mainly to online communities, delimited digital spaces of social aggregation around a specific domain of interest. In recent years, however, these privileged sites have been supplemented or sometimes replaced by social media sites and metadata in digital ethnographic research. The ongoing rise of these new spaces for ethnographic fieldwork, in turn, promotes new types of ethnographic practice that are still partly unexplored (Delli Paoli, 2022 ). Despite this change, ethnographic activity retains its original meaning, namely the interest in culture as a text that must be decoded by the ethnographers, who cannot merely read the data. It is, therefore, still assumed as ontologically central that creation and creativity are inherent in ethnographic research (Delli Paoli, 2022 ). Geertz ( 1973 ) defines “thick descriptions” as deep cultural representations, which do not stop at the exteriority of things, but take into account stratified cultural meanings and thus manage to unravel the fabric of culture and produce descriptions that are consistent with the indigenous point of view. On an epistemological level, the process of cultural translation appears (including in the digital environment) as a tension between foreignness and familiarity, in the dialogical dialectic between detachment and empathy. Just as in in-presence ethnography, digital ethnographers must maintain what Davis ( 1973 ) defines as the balance between the Martian, who strives to maintain detachment from the cultural and cognitive assumptions of the natives, and the convert, who identifies totally with the cultural models of the natives. On the methodological level, digital ethnography reaffirms the centrality of observation. As in classical ethnography, such observation can involve a different involvement of the researcher in the community under investigation. However, unlike classical ethnography, this observation opens up further, hidden forms of observation that are not possible in the case of the physical participation of the researcher on the field—as it is not possible to conceal his presence. The literature is divided between proponents of the two types of observation. The arguments in favor of overt observation revolve around the ethical and deontological aspects of research and the need to reveal to the subjects that they are being observed and studied. From this point of view, covert observation, also known as covert access or lurking, would be an unethical practice. Arguments in favor of covert (or lurking) observation, on the other hand, emphasize the non-intrusiveness of this method, which favors the “naturalness” of the information gathered (Masullo et al., 2020 ).

From this point of view, Delli Paoli ( 2022 , p. 200) observes that “On the one hand, there are scholars who suggest that lurking is not an ethnographic observation in the traditional sense and therefore not a “correct” ethnography (....) it provides any deep understanding of the community, but only a superficial description. On the other hand, there are scholars who idealize the possibility of lurking, which would offer a unique opportunity for “natural” data collection, as members are unaware of their status as informants and the presence of the researcher does not cause them to change their behavior”.

The choice between one and the other type of observation is not completely free. In cases where the presence of a researcher would not be welcome, for instance in the case of sexual minorities or practices at the limits of legality, covert observation remains the only possible way into the field.

Other specificities of the digital ethnographic approach, compared to classical face-to-face ethnography, are to be found in its efficiency in data collection, which requires much less time, and its opportunity to expand the geographical dimension of the research field and connect networks scattered all over the world. The researcher does not need to travel anywhere; information can be located and stored on the Internet without having to be recorded and transcribed as the traditional ethnographer must do (Kozinets, 2002 ). Another strength is the invisibility and relative discretion of the researcher: cyberspace allows researchers to be invisible to the people they are observing more easily than in face-to-face observation (Kozinets, 2010 ; Scaramuzzino, 2012 ; Murthy, 2013 ; Varis, 2014 ; Masullo et al., 2020 ). However, the digital ethnographic approach also has some limitations compared to in-person research. In the online environment, the episodic nature of the relationship that the members have with a virtual community (such as a blog, a discussion forum, or a Facebook group) requires a rethinking of the concept of community and communitarianism and makes it difficult to investigate relevant aspects in physical contexts, such as those of a structural nature relating to the dimension of power (which in the sociological sense cannot be deduced only from the level of participation of the users, nor from the configuration of the posts, opinion leaders, and shifts in interaction). The level of involvement of the researchers in the community studied will also vary depending on the degree of familiarity they can create with the members of a community—who, moreover, are ever-changing and for whom socio-demographic characteristics (gender, age, ethnicity, educational qualification, social class, etc.) do not always come to the fore (or are not always true in the digital sphere). The latter aspect makes it clear that digital ethnography cannot be considered a mere transposition of physical ethnography, and that the renunciations it requires are acceptable in the case of phenomena that find their only form of expression in the digital world and require a multi-method approach of exploration (of observing, questioning, and reading).

The following section will describe in detail the phenomenon of asexuality to provide some characteristics of the population that recognizes itself in this expression of sexual orientation. This will also allow us to grasp the reasons why digital ethnography is considered a particularly valid approach for studying hidden populations, which find many spaces for their expression in the digital environment (Monaco, 2021 ).

The phenomenon of asexuality: A literature review

In recent years, the number of self-described “asexual” people has increased. In the literature, asexuality (or the acronym ACE) is defined as a sexual orientation in which the person declares an absence and/or a consistent reduction in sexual and erotic attraction or frequency of face-to-face sexual practices (Decker, 2015 ; Gupta, 2017 ). Recently, the definition has been updated in the experience of little or no sexual attraction to include a more comprehensive spectrum of experiences of sexual attraction (Carrigan, 2011 ; Decker, 2015 ).

The study of asexuality has prompted the scientific community to trace the possible motivations and explanations that contributed to the formation and spread of the phenomenon. On the other hand, it also made explicit the need to rework and reconsider the normative parameters on the meaning of sexuality, which in our society is often understood as a sine qua non of romantic and emotional relationships between partners. In a context characterized by a widespread appeal to sexuality, asexuality challenges the dominant conceptualization of sex as a universal and natural dimension and sheds light on the different ways in which individuals conceive it depending on their biographical experience and subjective desires (Delli Paoli and Masullo, 2022 ).

Bogaert and Skorska ( 2011 ), one of the main authors who studied asexuality, highlights two different subcategories: primary , in which the subjects never experienced a hetero-referenced sexual attraction/interest, and acquired , in which the subjects, after a period of hetero-referenced sexual attraction/interest, define themselves as ACE due to personal and social motivations that scholars are beginning to explore.

A further distinction (and sub-classification) within the ACE condition stems from the studies of Poston and Baumle ( 2010 ), who highlighted how some categories of people cannot be included in that of asexuality. For example, those who choose chastity before marriage, or who are celibate for religious reasons, or, finally, INCELS (involuntary celibates), subjects in whom sexual attraction and erotic desire are not absent, but “unexpressed” due to social, psychological, or cultural conditions.

Lehmiller and Gormezano ( 2022 ) pointed out that asexuality affects about 1% of the American population, pinpointing four aspects that identify this condition.

• a) It does not correspond to chastity . Both conditions are characterized by the absence of sexual activity, but their motivations differ. Asexual people experience a total or partial absence of erotic desire and sexual attraction toward others. Conversely, people who choose chastity continue to have sexual attraction toward other people.
• b) It is not a sexual dysfunction . The asexual condition is a normal and possible expression of sexual orientation; it is not related to any organic or psychological pathology of the sexual sphere.
• c) It is not related to inexperience . Asexuality is not attributable to shyness or other expressions of a psychological nature.
• d) It is not devoid of autoeroticism . While it is true that asexual persons are not attracted to other people, this does not imply that they avoid regular autoeroticism and sexual self-gratification.

For Lehmiller, the asexual condition is ultimately an identifiable and well-structured sexual orientation in its own right.

The scholar also proposes a further classification of asexual persons depending on their relationship with sex and sexual practices, distinguishing between the following: (a) sex-repulsed , i.e., people who feel repulsion toward sex or some specific elements of it; (b) sex-averse , i.e., people who have no intention of having sexual experiences, who are distinguished from sex-repulsed in that a sex-averse person does not necessarily feel repulsion toward general sex, but does not consider it a central aspect of their existence; (c) sex-indifferent , those who do not have a particular interest in sex; (d) sex-favorable , people who experience interest and desire in sex, without being reflected in a constant search for sexual experience.

The asexual condition does not exclude sentimental and romantic attraction to other people, an emotional attraction that is not reflected in a sexual experience (the latter being understood as a practice). Asexual persons, therefore, can be identified as homoromantic , who experience emotional attraction to persons of the same sex, heteroromantic , who experience relational and emotional attraction to persons of the opposite sex, biromantic , who experience emotional attraction to both sexes, panromantic , who experience attraction to other people regardless of their sex and gender identity, and, finally, aromantic (AroAce in the literature) who do not experience sexual, emotional, or relational attraction to any person, regardless of their gender and sexuality.

The asexual condition has been on the rise in recent years among adolescents and young adults, to the point that some scholars are questioning whether this constitutes a generational trait of our age which needs to be addressed. To test this hypothesis, McInroy et al. ( 2021 ) recently conducted a study of 600 Americans aged between 14 and 24 in which they found that around 24% defined themselves as not interested in sex or sexual practices, a percentage that almost doubles in the 14 to 18 years old cohort, to around 45%. The authors link this condition, particularly for younger people, to a phase of “identity instability” or a “transitional” phase of self-knowledge, a hypothesis also supported by the progressive reduction in the percentage of asexual people as age increases.

Studies show that the condition of asexuality and aromanticism is stigmatized not only within mainstream society but also in the LGBTQ+ environment, as it is considered unnatural and/or related to dysfunctional aspects of the psychological or sexual sphere (Robbins et al., 2016 ).

In this regard, a study conducted by MacNeela and Murphy ( 2015 ) on an LGBTQ+ online community found that around 56% of members had not made their asexual orientation explicit in their profile presentations, and that disclosure of their asexual status only occurred at a later stage and/or during an offline meeting.

Finally, Gupta ( 2017 ) traces similarities and differences between the coming out of other non-conforming identities in the LGBTQ+ community and that of asexual and aromantic people. In both cases, there is a desire to come out of the closet, for authenticity and the possibility to relate to people coherently, explicitly highlighting fundamental aspects of the process of identity self-determination. However, this choice also increases the subjects' vulnerability to negative experiences such as harassment, discrimination, marginalization, and violence, since in mainstream society the absence of sexuality is not accepted and integrated—where sexuality is understood as an obligation to which both men and women (albeit with different meanings) are naturally called upon to respond (Kosciw et al., 2013 ; Gupta, 2017 ).

Recent studies in Italy have confirmed the preference of LGBTQ+ people for digital environments to make their sexual identity explicit and as a specific field of socialization to sexuality, also considering the persistence of a general homophobic and transphobic culture together with the repudiation of alternative sexual expressions. Consequently, the latter enjoy a greater possibility of being experienced in digital spaces than in offline reality (Carrigan, 2011 ; Bacio and Peruzzi, 2017 ; Masullo and Coppola, 2020 , 2022 ). Although the condition of asexuality constitutes a sexual orientation in its own right, it shares some characteristics with other subjectivities of the LGBTQ+ universe: it is, to all intents and purposes, one of the “non-normative”' sexual orientations and, therefore, contrast with the imposition of a prevailing sexual model, which finds its raison d'être in “reproduction”. Furthermore, it experiences the same mechanisms of discrimination insofar as this orientation does not find space for its open and complete explicitness in the environments of public society.

The recent digital revolution has affected various spheres of everyday life, broadening and complexifying the social and communicative contexts and spaces for everyone.

The creation of “virtual spaces” has represented a precious opportunity for social emancipation for those subcultures that previously struggled to find aggregative contexts and opportunities for confrontation in mainstream and offline society.

These resources for “emancipation” have proved to be suitable and convenient for the LGBTQ community and asexual people who, thanks to the peculiar characteristics of the web society, have created different and diversified tools for knowledge, comparison, aggregation, and the search for possible sentimental and/or sexual partners.

Cyberspace represents the main, if not the only, space for the aggregation and sharing of opinions, reflections, and of identity confrontation for the new non-conforming sexual identities, such as non-binary, pansexual, and asexual people.

On the one hand, these “new instances” find in the virtual sphere impulses and identity drives to emancipate themselves and consolidate their process of self-determination. On the other hand, however, it is precisely within the online community that they experience forms of discrimination and social disavowal.

In this regard, Smith ( 2012 ) spoke of the delegitimisation of the ACE identity from public discourse, defining it as an invisible and denied society in the offline and online mainstream community, positing the need for specifically dedicated, private, closed, and selective communicative spaces and spheres of confrontation.

The need to build spaces of emancipation and sharing specifically for ACE persons has given rise to the creation of numerous communities, chats, and social pages for this condition worldwide.

McInroy et al. ( 2021 ) recently investigated the use of online communities by people who self-define as asexual and aromantic, highlighting certain functions considered fundamental to a process of self-determination and self-definition . According to the research data, about 14.6% of the participants stated that they had attended or were attending online LGBTQ+ support groups to find information, to find information and clarifications about their condition for the self-determination process. Another important aspect is the search for information on pathologising the Ace condition: about 45.7% of participants sought and requested news, information, and experiences on mental health, psychological, biological, and sexual aspects possibly involved. Finally, 34.5% of participants explicitly stated a relational and social purpose of using the community, highlighting how expressing oneself in a safe, albeit virtual, place is among the main motivations to join the platform, as well as to look for people with similar or partly overlapping experiences.

Materials and methods

Research design.

Starting from the theoretical premises argued above, this section aims to document the various steps of digital ethnographic research in the light of the specific field examined here, that is, the processes of self-definition of the users of the Italian online community dedicated to asexual people, to identify and analyse common traits and differentiations in the imagery and use of cyberspace. It should be noted that this essay follows previous work on the AVEN (Asexual Visibility and Education Network) web community, one of the most important online communities of asexual people, aimed at analyzing the processes of self-identification, as well as the plurality of experiences and attitudes expressed by these people in their request for greater freedom from the constraints of sexuality as a necessary imperative for building meaningful relationships with others, including on a romantic level (Delli Paoli and Masullo, 2022 ).

We decided to replicate the same study in a community frequented mainly by Italian people, given that the previous research focused on people familiar with the English language. This choice excluded those who did not speak the language and generated a partial view of the phenomenon in the country. While it is true that patriarchy and heterosexism almost universally shape how relate to the identity-related dimensions of gender and sexuality, in Italy these normative axes can affect them in a very peculiar way. Therefore, we decided to apply the same research approach (that of digital ethnography) to explore in greater detail this specific Italian web community in which relational and power dynamics may be at work in a different way from the case previously examined 2 .

The first fundamental step in the ethnographic research was the definition of the field which, as Kozinets ( 2015 ) points out, concerns not so much the characteristics of the medium or its use, but rather the cultural, relational, and value experiences developed within cross-media digital spaces—in other words, the digital worlds of meaning.

As already out above, digital ethnography was initially born to study online communities that organized themselves around shared lifestyles, values and moral beliefs, emotions, and consumption practices (Cova, 1997 ). The recent technological developments of Web 2.0 and the pervasive diffusion of mobile devices forced the research to adapt to the fact that the spaces and times of online discussions have become increasingly transmedia and linked to a thematic domain rather than a single medium. As Delli Paoli points out, “Most online interactions take shape in a volatile context, without defined spaces but with content delimited by the use of tags, algorithms and data mining techniques that organize the flow of information and act as transversal metadata across web pages, allowing actors to move in non-linear directions from one medium to another” (Cova, 1997 , p. 46).

Given its digital nature, the netnographic approach cannot be media-centric—i.e., tied exclusively to the study of defined online spaces such as blogs and communities.

Adopting the distinction between meta-fields as spaces unrelated to a media and built around a topic and contextual fields as contextualized spaces in blogs, communities, discussion forums, social media groups, etc. (Airoldi, 2018 ; Delli Paoli, 2022 ), the study opts for the latter by examining the Italian online community, which has around 3,000 users. The cases observed are the result of a reasoned selection based on “theoretical sampling” criteria that envisage the selection of typical cases able to provide the best opportunities to find the information necessary for the study and that, as a sample, can be close enough to the population analyzed (though not representative).

Digital ethnography can be considered a distinctive method to study social changes resulting from the digital world itself. In the case of sexuality, for instance, the digital sphere offers unprecedented discursive spaces to those sexual minorities that find no space in offline reality. It is in the digital world that these minorities find the full possibility for self-expression (as in the case of asexual people) and within this context that these individuals interact and construct their own language, giving rise to specific practices and scripts that would not be possible or imaginable outside this sphere (Rinaldi, 2016 ; Delli Paoli and Masullo, 2022 ). Digital ethnography thus proves to be particularly appropriate as a research approach, especially to study those phenomena born in the digital realm, and to investigate generative and productive (and not only reflexive) digital identities and cultures, making it possible to document the performative use of language (Butler, 2004 ).

The second step entailed the definition of research questions. From this point of view, the digital ethnographic approach highlights the typical advantages of interpretive approaches, insofar as there is no sequential order between field definition and research questions (Hammersley, 1995 ). While it is true that in some cases the research questions guide the selection of the field, the difficulty of finding information on the asexual condition, which is considered a hidden and invisible population in offline reality, determined the need to first select the field of study, and then the research questions. Nevertheless, the latter also gradually emerged during the observation, given that this is a virtually unexplored field in Italian research.

The lack of studies on the subject does not imply that the research approach lacks a theoretical foundation. On the contrary, we believe that the choice of field, and the selection of what to observe, are choices that must always be contextualized to the fields and objects examined (in our case, that of sexuality). It could not be otherwise: an observation without a guide, not oriented by what Blumer ( 1954 ) called “sensitizing” concepts, would prevent the researchers from selecting and distinguishing, within the reality observed, the “meaningful” elements from those “banal” and misleading. Moreover, observation can only take place based on a series of pre-cognitions relating to the field one intends to explore. As we can learn from one of the most famous community studies, conducted by Lynd and Lynd ( 1970 ) on Middletown, observation must always be preceded by background research that includes not only the study of specific literature on the subject but also documentary analysis (in the case in point, the study of statistical sources).

Another fundamental aspect was the accessibility of the field. In this case, it depends on both the characteristics of the platform being examined, i.e., its “accessibility” and the need to choose an online community in which the level of interaction is particularly intense and which for the chosen topic constitutes a reference in the digital environment. Regarding the first point, the asexual community allows access only after registering and filling in a profile. Regarding the second point, the chosen online community represents the main space where Italian asexuals meet. This digital field was chosen after an exploratory observation aimed at detecting the main users and gatekeepers, the intensity of interactions and the affordances of the platform.

From the outset, the research was confronted with ethical dilemmas, directly related to its objectives and the techniques it intended to employ. Regarding observation—understood as the main technique of digital ethnographic research—we opted for a mixed mode between covert access and the explication of our identity as researchers. From an ethical point of view, as pointed out above, the omission of identity becomes justifiable and legitimate, as some scholars claim, in certain circumstances, especially when the benefits outweigh the social and ethical costs of such a violation. In this case, for instance, making the researcher's role explicit from the outset would have made the field inaccessible.

In the first phase, we gathered information covertly without revealing our presence to those concerned, a more appropriate—if ethically questionable—choice for studying invisible populations. In the second phase, we informed users of the research and our role as researchers. We never intervened to alter the context of the interactions. On the contrary, we strove to preserve the ecology of the environment and, therefore, our method can be defined as non-participant observation.

The observation period went from 22 October to 22 December 2021. We examined 200 profiles and presentations and over 500 related posts, collected in a specific excel grid. Alongside the grid, we drew up a daily diary in which we noted down field notes related to what we read in the online community, which proved valuable in the definition of the first research questions. Among the most significant, which guided the subsequent steps of the research, were the following:

• RQ1: What are the main motivations and/or paths that lead the individual to choose a relational modality involving the absence and/or reduction of sexual activity?
• RQ2: How do users use the community and for what purposes?
• RQ3: How do users define themselves in relation to the different meanings attributed to the concept of asexuality?
• RQ4: What differences emerge between the way users define themselves and their main socio-demographic characteristics?

The researchers' identity was later made explicit by contacting certain users willing to answer questions through a private messaging system provided by the platform. This procedure constitutes the second technique employed in this study: we decided not to limit ourselves to “observing” but also to “question” our cases, for two main purposes: (1) to clarify certain meanings connected to the language typical of this subculture which could have escaped the researcher inexperienced in the universe examined, (2) to delve deeper and reinforce certain intuitions gathered during the observation phase.

About the “reading”, we decided to examine 200 profiles in the observed period. We proceeded to extrapolate a series of information on socio-biographical variables to infer possible associations between them and certain traits of asexual persons identified in the literature.

The decision to analyse the ecological information made available by the medium Rogers ( 2013 ) when he affirmed the follow-the-medium principle as foundational to digital methods: the researcher is called upon to follow the ontological properties of the medium, to immerse himself in it, to equip himself with a methodological apparatus that is natively digital by making the technical strategies and natural logics of digital media his own and using them as methodological sources.

For clarity's sake, we described the operations of “observing”, “questioning”, and “reading” sequentially, in relation to the three techniques employed in this study. However, they most often occurred in parallel, taking full advantage of the flexibility of the ethnographic approach.

The last phase of the research concerned information analysis and was mainly conducted through qualitative content analysis approaches, also known as Ethnographic Content Analysis (Altheide, 1987 ).

Content analysis is essentially based on the interpretation and classification of texts with the help of the most diverse, sometimes competing, and contradictory procedures (Rositi, 1998 ) to infer from the texts their meanings and contexts of use (Krippendorff, 2013 , p. 24). Through this method, texts are brought back to a limited number of categories using explicit analytical decomposition, classification, and coding procedures (Weber, 1990 ).

Content classification employs inductive coding strategies. In other words, instead of coding the texts based on a priori classifications, the classification is adapted in the process through the reading and re-reading of the texts. Text interpretation is carried out following the principles and techniques of the hermeneutic approach to social research (Montesperelli, 1998 ), which aimed to identify the widespread and shared common-sense dimensions related to the world of asexuality.

The following section will present some results. For ease of reading, we will begin by describing online presentations and interactions to construct a typology of asexual people. We will then try to see how these profiles are distributed according to the main socio-demographic variables deduced from the profile analysis. The aim is not only to arrive at a more complete analysis of the phenomenon but also to describe all the analytical procedures that can be used in this type of approach.

Following mainstream models: Emotional fragility and social pressures

When registering to the community, users are required to fill in a personal profile with socio-biographical information, including their gender, sexual orientation, age, place of residence and some considerations about themselves in terms of a brief presentation. These are generally followed by comments from other users. The resulting interactions shed a light on the various points of view on asexuality.

To delve deeper into the motives that lead people to self-identify as asexual, we examined the presentations in profiles, comments, and general interactions within the platform.

Through the analysis of this information, we discovered some of the motivations that lead users to identify themselves as “asexual”. We identified both individual factors, such as personality traits or emotional aspects connected to experiences that led them to voluntarily renounce sexual relations, and social and cultural factors, partly referring to social pressures connected to stigmatization and discrimination.

About the former, fragility-related experiences frame the choice of asexuality. According to the studies by Carrigan ( 2012 ), Foster and Scherrer ( 2014 ) and Yule et al. ( 2015 ), low self-esteem and a lack of trust in others are positively correlated with the decision to renounce sexuality. This same issue is also highlighted in some posts, such as the one below.

I am asexual. That is, I've never had sex and I don't care. The truth is that since childhood I have always been shy and awkward. My mother was alone, I mean I never knew my father and I have no brothers or sisters. It was always just the two of us, alone. In high school, I had few friends and those few had more problems than me. I currently study literature (...) and live in a house with other people. I have exchanged very few words with them. My life is full of silence and time. Perhaps I am asexual by choice, not my own. I see the future with fear (ID76) 3

Asexuality is experienced with great difficulty because the obligation to sexuality is taken for granted in intimate relationships, often leading to the need to envisage strategies to avoid all situations where the pressure becomes stronger.

Basically, I am absolutely not interested in sex, so much so that every time I fell in love I did absolutely nothing, I enjoyed being in their company every free moment, but constantly feared the moment when it would be inevitable to touch the subject (of course the “sexuals” expect it and at some point, sometimes pretending to joke about it, they will ask “but don't you like me? how come we never.. ?”)

Aware of being unfit to sustain a normal relationship, I have avoided it, I have tried to live with them exciting moments (and there have always been many), and I have carefully avoided situations in which we could risk finding ourselves alone in non-public places, I have always made sure that “it was getting so late that at that point I could at most offer them a ride home... like, you know, tomorrow I have a very busy day at work” (ID51) .

Many users name social expectations and other people's pressures on their personal experiences as one of the main reasons which have, over time, dulled and in many cases extinguished their interest in sexuality and sexual practices. Self-presentations often reveal cases of marginalization, loneliness, and high demands in the life contexts of individuals, starting with the family and ending with social and/or educational contexts.

I am terrible at introducing myself, so I'll get straight to the point. In my life, I have always perceived that something about me was different from my peers, until a few months ago. I was seen as the odd one out, maybe gay or who knows what was on his mind, perpetually lonely and not participating in male banter. As I grew up, I developed the “ability” to adapt and hide from others to make that awkwardness go away, which didn't belong to me, actually, since it had always seemed more like someone else's problem. I tried to be with girls, but they expected too much from me compared to what I could give both sexually and emotionally. The hardest thing was being able to talk and explain how I felt but when I tried to do that... “go to a psychologist and solve your problems”. Not that it helped much, actually, and the ironic thing, after all this time, at 35, I felt better watching BoJack Horseman and its explanation of Todd. Immediately afterwards I started to feel at peace with myself. A cartoon explained what I felt about myself and that above all I am not alone (ID80)

I am not exactly in my prime: I am 57 years old and for a long time now I have been, as I understand it, asexual. Sex has never been important to me. But I must say that since I got rid of it, I've been living much better. It was always a “gold rush” and many women made me feel inadequate because I was never good enough. Interest has steadily waned. Now I live my time with friends and people who have the same interests. Maybe I can find new friends even in this chat room. (ID123)

Ethnographic observation of self-presentations and interactions shows that some users experience a condition that in some ways overlaps with voluntary social self-isolation, better known as the Hikikomori Effect.

Recent studies (Masullo, 2021 ) have shown that the phenomenon of voluntary social self-isolation is rapidly expanding, particularly in younger people, and that this phenomenon has redefined and reworked many processes of socialization. In this case, the redefinition also encompasses sexual aspects, as highlighted by this post:

I hope I am on the right forum (...) I don't know if I can call myself asexual, but my situation is this. I have never had a relationship with anyone, and I have no sexual interest in anyone. I don't think I even know if I like boys or girls. But that's simply because I don't live among people, I haven't left the house since graduation. Yes, maybe I've gone out a few times to buy clothes or accompany my mother somewhere, but I tend to never leave the house and I don't have any friends, at least, not in Bergamo. So, I would like to know if there are people in this forum who are in the same situation as me? (ID44)

A typology of asexual people

The self-presentations and interactions on the platform allowed us to trace some of the specificities of people who define themselves as asexual or who are questioning their sexual identity, thus making it possible to obtain more details regarding the meaning of this choice, of which users are often not even clearly aware. The posts highlight two main characteristics, which would seem to ground or delineate certain ways of experiencing their condition as an asexual person, (even in the absence of shared definitions in the mainstream LGBTQ+ community): in simple terms, “love”, and sex. The former is how users consider and feel about the need to form relationships with others in sentimental terms, i.e., to build a meaningful relationship which can be a prelude to love and an emotionally fulfilling relationship. The latter is the degree of importance they attribute to sexual practices, which calls into play the need to relate with the other in a physical sense, in response to both a self-directed impulse (to feel sexual desire) and a hetero-directed one (in response to a social expectation connected to the influence of the main agencies of socialization to sexuality, including partners, family, friends, etc.,).

Based on these dimensions, we constructed a typology of asexual identities, taking full advantage of the potential of digital ethnographic research (Kozinets, 2015 ; Masullo et al., 2020 ). The typology results from the intersection of two dimensions: the degree of importance attached to the construction of a romantic relationship and the degree of importance attached to sex. Four hypothetical ways of being an asexual person are thus highlighted, which can be summarized in the following diagram ( Figure 1 ):

Typologies of users of Asexuality community.

The first quadrant in the upper left-hand corner includes those in an initial process of self-reflection regarding their sexual identity, who also use the web community to gather information to better define themselves. We called them “self-directed” asexuals. This group comprises individuals who focus their attention on sexuality per se rather than on the need to build meaningful relationships with others in a sentimental or romantic sense. Their posts—often in the form of a question—focus on the meaning of sex per se and on certain sexual practices, toward which they express curiosity or, in some cases, aversion. In this case, we see a hybrid form of asexuality, not yet clarified, or transitory, as is shown in the following post:

The aspect of autoeroticism and fantasies has not changed since I stopped seeking sexual relationships with partners. When I chat with someone, I try to sabotage any in-person meeting, I prefer to just have fantasies about that person, I think it is the right compromise between pleasure and self-protection (ID189)

I have read that many do not even practice masturbation, I couldn't do without it! But then I don't know if I can call myself asexual... is there someone like me who has no interest in sex with other people but doesn't stop pleasuring himself? (ID166)

In the second box at the top right, we find “hetero-directed” asexuals, i.e., individuals who feel the need to build meaningful romantic relationships with others but, at the same time, feel no interest toward sex and, in general, all kinds of sexual practices. It is worth noticing that, in this group, sex does not disappear but takes on significance depending on the pressures exerted by the social environment. These may relate, for example, to the demands of a partner, the desire to conform socially to others or the need for sexuality to ensure the continuation of the species, as the following two excerpts show:

Hello, in my life I have never felt a need to have sex, although I have made an effort to look like others, I am interested in sexual energies, (...) I am looking for simple acquaintance, on a friendship level and given my age I need “companionship”. I have many interests, I do meditation, I like traveling, and I like archaeology. (ID33)

Hi, I am an asexual guy who finds it unpleasant to have sex with girls and boys . I think sex is not fundamental to a relationship but only a necessary act for reproduction. If you feel the same way and want to compare notes, you can write to me (ID38)

The third box on the lower left is characterized by an exacerbation of relational closure toward others, a condition defined in the literature as AroACE or asexual aromantics . AroACE people are interested neither in the sexual aspects of the relationship nor in emotional and sentimental involvement.

Aromantic Asexual, I love art, old films, reading, and sport. I love walking surrounded by nature. I like meeting new people, and establishing friendly and sharing relationships, like many of you I do not feel the need for a sexual relationship (ID20) .

I can define myself as asexual but also aromantic. Romantic love is only a concept, and a very recent one at that, just think of history, who married for love? Personally, I find it bothersome to think about sex and I find it hard to think about love. Friendship is already demanding enough. (ID6) .

In the last box on the bottom right are the cases identified in the literature through the acronym ACE (Bogaert and Skorska, 2011 ; McInroy et al., 2021 ). They lack sexual impulses and a consequent reduction of sexual relations but maintain a strong desire to form relationships [with others] in romantic terms, according to the classic scheme of “platonic love”. This condition adheres to the purist conception of asexuality that is transversally evident in almost all users, without distinction for sexual orientation (that is, among both homosexual and heterosexual people). This is in line with recent theories that consider asexuality to be outside the official classification and taxonomies of sexual orientations. Below are two examples of typical presentations of ACE persons:

I discovered I was asexual last January after I made a recap of all my relational experiences with both girls and boys, which were characterized by a total lack of sexual attraction (always on my part), but by romantic attraction with strong emotional ties; but, alas, I was rejected because they saw me more as a friend. Forgive me if I have not written much, I am a man of few words. (ID3) .

Good evening, everyone. (...) I'm asexual and have recently been living this condition of mine with serenity. I must say that in my youth I was ashamed, especially in groups or at home, I felt like I was wrong. But now I am happy that I don't have to hide. I like being in company, I love the mountains and traveling. But above all I like polite people, if I were to meet someone interesting, I'm open to a sentimental relationship. Of course, I am looking for an asexual partner (ID40)

As per the research design, the final stage of the analysis, corresponding to the “reading” procedure, addressed the distribution of certain socio-biographic traits on the profiles of asexual persons on the platform. We reconstructed the latter through the typology presented above and deduced the former from the analysis of the profiles selected in the asexual community. Although we are aware that these data are not representative of the universe examined, we synthesized them from a statistical point of view, intending to also verify the relationships between the socio-biographical traits collected and certain characteristics associated in the literature with asexual people.

On the distribution of gender identity and sexual orientation on the profiles sampled, 68% of users self-identify with a male gender identity and 20% with a female gender identity. It is worth noticing that there is a significant presence of people declaring a non-binary gender identity (about 12%). The same applies to sexual orientation: while the majority identify as heterosexual (73.5%) or homosexual (about 17%), there is no shortage of people identifying as non-binary or pansexual ( Table 1 ).

Distribution of the sample surveyed according to gender and sexual orientation.

This difference in the incidence of males over females could lend itself to multiple interpretations, depending also on the different ways in which Italian men and women relate to sexuality and the most widespread collective imaginaries connected to it (Corbisiero and Nocenzi, 2022 ). While it is true that the current hypersexualisation of society affects all genders indiscriminately, prescribing a sort of “obligatory” sexuality, this takes on different meanings in the sample examined, also due to the different socialization paths to gender and sexuality experienced by men and women (Masullo, 2021 ). For the former, sexuality is a core aspect of the acquisition of a “hegemonic” male gender identity—thus a compulsory step as proof of one's appropriateness in the execution of one's gender role. For the latter, instead, sexuality is characterized by a lesser “centrality” which, even in the online environment, still fails to find an adequate space of explicitness (Masullo, 2021 ). In the case of men, the absence of sexual desire can be experienced as a source of concern, not least because of social pressures. For women, this condition is less felt, as sexuality remains relegated to the idea of a stable relationship and in specific cultural environments still bound to the idea of reproduction. In this sense, the absence of sexual desire is experienced by women with less concern, as this condition is regarded as a normal aspect of the process of socialization to sexuality, and subordinate to the need to establish an emotionally satisfying relationship.

All the users in the community define themselves as asexual or question their sexuality as falling into this category Out of the 200 profiles surveyed during the period under consideration, about 54% identify themselves as “tout court” asexuals, what we called “traditional asexuality” (ACE in the literature). They are characterized by the total or partial absence of sexual desire but wish to establish an emotional and sentimental relationship ( Table 2 ). 32.5% of the profiles report total closure toward the other, lacking desire toward both sex and the need to establish a sentimental relationship, a condition defined as “Aromatic Asexual” (AroAce in the literature). Finally, 13.5 per cent of the users are unclear or uncertain about their identity: they show interest in sexuality or at least curiosity about it. This is true in both a hetero-directed and a self-directed sense. In the former case, for example, to accommodate the desires of a partner; in the latter, there is desire to experience certain practices such as sexting or cybersex). These people only partly fall within the category of asexuality—which, however, it is worth remembering, does not constitute a fixed identity but is subject to change and negotiation processes over time and in the spaces of online and offline sociality. Any attempt at classification would, therefore, prove inadequate, even if it is analytically valid when constructed to describe the phenomenon ( Table 2 ).

Distribution of the types of asexual persons.

Finally, we explore the distribution of the identified types in class age following the criterion of division defined by the ISTAT and longitudinal surveys on youth which in the Italian context consider to be young people between 18 and 34 years old (Toniolo, 2022 and previous annual reports). Those under 18 years old may be considered teenager and those above 35 adults.

By cross-referencing the reconstructed categories of asexual people with the age groups considered, we can highlight the generational distribution of the phenomenon examined, as shown in Table 3 .

Distribution by age cohorts of the types of asexual people.

Traditional Asexuals (ACE in the literature) are mainly those between 18 and 34 years old (68%) and under 17 years old (42%). For the younger age cohorts, sentimental aspects seem to be more important than for the later cohorts. This is also evident if one compares this with the Aromatic Asexual condition (AroACE in the literature) which is more concentrated among the over 55-year-old (75%) followed by the 35–54 year-old (59%). It can be hypothesized that for the latter cohorts, the condition of aromantic asexuality is the outcome of a progressive disinterest in sexuality following unsatisfactory experiences.

The condition of aromatic asexuality is also evident among the under 17-year-old group (40%). It could be a “comfort choice” to delay the creation of sentimental and sexual relationships to avoid disappointment, alleviate relational performance anxiety, or for subjective reasons that would require a more in-depth study with qualitative research approaches.

The more complexly defined “self-directed” and “hetero-directed” asexual profiles refer to hybrid conditions ranging from situations which express curiosity only for certain sexual practices (such as sexting or cybersex) to others marked by a total lack of interest in sexuality, which is practiced only under external pressures.

They are more common among the teenagers (under 17-year-old) and the young people between 18 and 34 year-old compared to other cohorts.

Although it is not the purpose of this article to analyse the characteristics associated with these age cohorts, the greater propensity toward hybrid profiles of the younger generations (meaning both those under 17 and those between 18 and 34 years of age) could be associated with the complex and nuanced stage of their life with multiple sexual and romantic attractions, which are rarely static but fluctuate throughout their lives (Porrovecchio, 2012 ; Savin-Williams, 2021 ). Although the data would need further investigation, it can be hypothesized that the greater propensity of these age cohorts to experiment could indicate that the choice of asexuality is only temporary, or linked to specific relationships, and it can hardly be framed within the asexual condition tout court as defined in the literature.

Discussion and conclusions

Limitations and potential of digital ethnographic research and considerations on its application to the field of sexuality studies.

The present study addressed asexual people and the processes of self-definition in the digital environment. The digital ethnographic research approach allowed us to explore some of the essential steps of the research design inspired by digital ethnography, highlighting the main techniques to employ, the dilemmas to resolve before commencing the fieldwork, and the types of analysis to carry out. The transposition of classical ethnographic techniques into the digital environment constitutes a resource for researchers who intend to explore phenomena concerning populations that are difficult to reach. Digital ethnography proves particularly suitable where such populations take on their specific connotation in digital spaces, as in the case considered here. Our research shows that, in the absence of a shared interpretation of asexuality, its definition results from the interaction with others, an intersubjective process occurring mainly in the digital environment and which has no place elsewhere. By offering the possibility of creating profiles, introducing and describing oneself, and commenting, the web community provides useful tools to arrive at a shared definition, create languages and socialize with them, and attribute meanings—the scripts of a digital subculture still in the making but with its specificities compared to others that make up the variegated LGBTQ+ universe. The study of the profiles, self-presentations and comments allowed us to explore how the asexual condition goes far beyond the question of sexual orientation, resulting instead from how people relate to a norm that sees sexuality as a “compulsory” step in the processes of gender and sex identification. It is no coincidence that in the web community examined, most of the users are men. For them, sex is the benchmark against which gender identity is socially tested. Asexuality can be seen as an indicator of a crisis of masculinity, a hypothesis that deserves future exploration with the help of other techniques and a larger sample.

The proposed typology of asexual persons highlights how the choice of asexuality is a process characterized by numerous ways of understanding sexuality and the desire for romantic relationships, marked by discontinuities more than endpoints. These subjective propensities depend on biographical, social, and imaginary experiences rather than natural predispositions or simplistic and essentialist readings of sexual identity. While this approach has its advantages, as highlighted by this case study, it is precisely within its framework that the concrete limitations to its application become apparent. The first refers to ethical issues, which directly call into question the role of the researcher and his positioning in the research field and the consequences produced by his representations. In the field of sexuality, in particular, critical approaches—such as postcolonial theory, feminist critique, and queer theory—have greatly emphasized the researcher as an interpreter of the Other/s, as a privileged observer who risks subordinating those being observed and described. The emphasis on reflexivity in social research makes it possible to understand how “meanings result from the interpretive negotiation occurring on the field between researchers and participating subjects as embedded subjects and producers of knowledge whose interactions (both in the field and through textual strategies) are filtered and constructed based on gender, sexuality, nationality, race and ethnicity, social class, age, and bodily ability” (Grassi et al., 2020 , p. 111). Guided by these concerns, we chose to declare ourselves as researchers to deepen some reflections stemming from what we observed and to respect the point of view of the natives as much as possible. We were, indeed, well aware that the readings produced without this confrontation could unleash multiple consequences on subjects who are already vulnerable, and therefore expose them to further processes of marginalization and exclusion. A further issue of digital ethnography is taking into account the peculiarities of an observation that takes place in a digital environment. We must consider the effect of the medium of communication which, unlike in the case of face-to-face observation, often does not allow researchers to go deeper into the characteristics of the subjects. By conducting in-depth research through “questioning” (that is, privately contacting some users and asking them for details and clarifications), we intended to make up for some of these gaps. The discontinuity, nevertheless, remains “unbridgeable” compared to traditional face-to-face ethnographic research—the main limitation to be taken into account when choosing this type of approach. The future of digital ethnographic research will thus lie in the way it manages to meet some of these challenges, which will depend both on the researchers' ability to combine different research techniques, and on the technological evolution of the tools proposed by the web society. The latter seems to be increasingly moving toward overcoming the differences between real and virtual, between research carried face-to-face or remotely.

Data availability statement

Ethics statement.

Ethical review and approval was not required for the study on human participants in accordance with the local legislation and institutional requirements. Written informed consent from the participants' legal guardian/next of kin was not required to participate in this study in accordance with the national legislation and the institutional requirements.

Author contributions

The whole research is a result of intense collaboration among the authors. In the final draft, GM wrote sections: Introduction, The digital ethnographic approach: Similarities and differences with the traditional ethnographic approach, Research design, and A typology of asexual people. MC wrote sections: The phenomenon of asexuality: A literature review and Following mainstream models: Emotional fragility and social pressures. The authors co-wrote section Discussion and conclusions. Both authors contributed to the article and approved the submitted version.

1 Among the many definitions, we find: Cyber Ethnography (Morton, 2001 ), Ethnography of Virtual Spaces (Burrel, 2009 ), Virtual Ethnography (Hine, 2008 ), Internet Ethnography (Boyd, 2008 ), Ethnography on the Internet (Beaulieu, 2004 ), Internet-related ethnography (Postill and Pink, 2012 ); Webnography (Puri, 2007 ).

2 While some considerations and results are akin to those emerged from the previous research on the AVEN community (Delli Paoli and Masullo, 2022 ), we will not be making any comparison. The phenomenon of asexuality is here a case study to present the digital ethnographic approach and not the aim of the essay.

3 In order to preserve partecipants'anonimity we have used an alphanumerical code for each partecipant (ID * ). For the same reason, we have dropped out any socio-biographical information.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

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• Research article
• Open access
• Published: 15 April 2024

What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography

• Trisha Greenhalgh   ORCID: orcid.org/0000-0003-2369-8088 1 ,
• Julie L. Darbyshire 1 ,
• Cassie Lee 2 ,
• Emma Ladds 1 &
• Jenny Ceolta-Smith 3  

BMC Medicine volume  22 , Article number:  159 ( 2024 ) Cite this article

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Long covid (post covid-19 condition) is a complex condition with diverse manifestations, uncertain prognosis and wide variation in current approaches to management. There have been calls for formal quality standards to reduce a so-called “postcode lottery” of care. The original aim of this study—to examine the nature of quality in long covid care and reduce unwarranted variation in services—evolved to focus on examining the reasons why standardizing care was so challenging in this condition.

In 2021–2023, we ran a quality improvement collaborative across 10 UK sites. The dataset reported here was mostly but not entirely qualitative. It included data on the origins and current context of each clinic, interviews with staff and patients, and ethnographic observations at 13 clinics (50 consultations) and 45 multidisciplinary team (MDT) meetings (244 patient cases). Data collection and analysis were informed by relevant lenses from clinical care (e.g. evidence-based guidelines), improvement science (e.g. quality improvement cycles) and philosophy of knowledge.

Participating clinics made progress towards standardizing assessment and management in some topics; some variation remained but this could usually be explained. Clinics had different histories and path dependencies, occupied a different place in their healthcare ecosystem and served a varied caseload including a high proportion of patients with comorbidities. A key mechanism for achieving high-quality long covid care was when local MDTs deliberated on unusual, complex or challenging cases for which evidence-based guidelines provided no easy answers. In such cases, collective learning occurred through idiographic (case-based) reasoning , in which practitioners build lessons from the particular to the general. This contrasts with the nomothetic reasoning implicit in evidence-based guidelines, in which reasoning is assumed to go from the general (e.g. findings of clinical trials) to the particular (management of individual patients).

Not all variation in long covid services is unwarranted. Largely because long covid’s manifestations are so varied and comorbidities common, generic “evidence-based” standards require much individual adaptation. In this complex condition, quality improvement resources may be productively spent supporting MDTs to optimise their case-based learning through interdisciplinary discussion. Quality assessment of a long covid service should include review of a sample of individual cases to assess how guidelines have been interpreted and personalized to meet patients’ unique needs.

Study registration

NCT05057260, ISRCTN15022307.

Peer Review reports

The term “long covid” [ 1 ] means prolonged symptoms following SARS-CoV-2 infection not explained by an alternative diagnosis [ 2 ]. It embraces the US term “post-covid conditions” (symptoms beyond 4 weeks) [ 3 ], the UK terms “ongoing symptomatic covid-19” (symptoms lasting 4–12 weeks) and “post covid-19 syndrome” (symptoms beyond 12 weeks) [ 4 ] and the World Health Organization’s “post covid-19 condition” (symptoms occurring beyond 3 months and persisting for at least 2 months) [ 5 ]. Long covid thus defined is extremely common. In UK, for example, 1.8 million of a population of 67 million met the criteria for long covid in early 2023 and 41% of these had been unwell for more than 2 years [ 6 ].

Long covid is characterized by a constellation of symptoms which may include breathlessness, fatigue, muscle and joint pain, chest pain, memory loss and impaired concentration (“brain fog”), sleep disturbance, depression, anxiety, palpitations, dizziness, gastrointestinal problems such as diarrhea, skin rashes and allergy to food or drugs [ 2 ]. These lead to difficulties with essential daily activities such as washing and dressing, impaired exercise tolerance and ability to work, and reduced quality of life [ 2 , 7 , 8 ]. Symptoms typically cluster (e.g. in different patients, long covid may be dominated by fatigue, by breathlessness or by palpitations and dizziness) [ 9 , 10 ]. Long covid may follow a fairly constant course or a relapsing and remitting one, perhaps with specific triggers [ 11 ]. Overlaps between fatigue-dominant subtypes of long covid, myalgic encephalomyelitis and chronic fatigue syndrome have been hypothesized [ 12 ] but at the time of writing remain unproven.

Long covid has been a contested condition from the outset. Whilst long-term sequelae following other coronavirus (SARS and MERS) infections were already well-documented [ 13 ], SARS-CoV-2 was originally thought to cause a short-lived respiratory illness from which the patient either died or recovered [ 14 ]. Some clinicians dismissed protracted or relapsing symptoms as due to anxiety or deconditioning, especially if the patient had not had laboratory-confirmed covid-19. People with long covid got together in online groups and shared accounts of their symptoms and experiences of such “gaslighting” in their healthcare encounters [ 15 , 16 ]. Some groups conducted surveys on their members, documenting the wide range of symptoms listed in the previous paragraph and showing that whilst long covid is more commonly a sequel to severe acute covid-19, it can (rarely) follow a mild or even asymptomatic acute infection [ 17 ].

Early publications on long covid depicted a post-pneumonia syndrome which primarily affected patients who had been hospitalized (and sometimes ventilated) [ 18 , 19 ]. Later, covid-19 was recognized to be a multi-organ inflammatory condition (the pneumonia, for example, was reclassified as pneumonitis ) and its long-term sequelae attributed to a combination of viral persistence, dysregulated immune response (including auto-immunity), endothelial dysfunction and immuno-thrombosis, leading to damage to the lining of small blood vessels and (thence) interference with transfer of oxygen and nutrients to vital organs [ 20 , 21 , 22 , 23 , 24 ]. But most such studies were highly specialized, laboratory-based and written primarily for an audience of fellow laboratory researchers. Despite demonstrating mean differences in a number of metabolic variables, they failed to identify a reliable biomarker that could be used routinely in the clinic to rule a diagnosis of long covid in or out. Whilst the evidence base from laboratory studies grew rapidly, it had little influence on clinical management—partly because most long covid clinics had been set up with impressive speed by front-line clinical teams to address an immediate crisis, with little or no input from immunologists, virologists or metabolic specialists [ 25 ].

Studies of the patient experience revealed wide geographical variation in whether any long covid services were provided and (if they were) which patients were eligible for these and what tests and treatments were available [ 26 ]. An interim UK clinical guideline for long covid had been produced at speed and published in December 2020 [ 27 ], but it was uncertain about diagnostic criteria, investigations, treatments and prognosis. Early policy recommendations for long covid services in England, based on wide consultation across UK, had proposed a tiered service with “tier 1” being supported self-management, “tier 2” generalist assessment and management in primary care, “tier 3” specialist rehabilitation or respiratory follow-up with oversight from a consultant physician and “tier 4” tertiary care for patients with complications or complex needs [ 28 ]. In 2021, ring-fenced funding was allocated to establish 90 multidisciplinary long covid clinics in England [ 29 ]; some clinics were also set up with local funding in Scotland and Wales. These clinics varied widely in eligibility criteria, referral pathways, staffing mix (some had no doctors at all) and investigations and treatments offered. A further policy document on improving long covid services was published in 2022 [ 30 ]; it recommended that specialist long covid clinics should continue, though the long-term funding of these services remains uncertain [ 31 ]. To build the evidence base for delivering long covid services, major programs of publicly funded research were commenced in both UK [ 32 ] and USA [ 33 ].

In short, at the time this study began (late 2021), there appeared to be much scope for a program of quality improvement which would capture fast-emerging research findings, establish evidence-based standards and ensure these were rapidly disseminated and consistently adopted across both specialist long covid services and in primary care.

Quality improvement collaboratives

The quality improvement movement in healthcare was born in the early 1980s when clinicians and policymakers US and UK [ 34 , 35 , 36 , 37 ] began to draw on insights from outside the sector [ 38 , 39 , 40 ]. Adapting a total quality management approach that had previously transformed the Japanese car industry, they sought to improve efficiency, reduce waste, shift to treating the upstream causes of problems (hence preventing disease) and help all services approach the standards of excellence achieved by the best. They developed an approach based on (a) understanding healthcare as a complex system (especially its key interdependencies and workflows), (b) analysing and addressing variation within the system, (c) learning continuously from real-world data and (d) developing leaders who could motivate people and help them change structures and processes [ 41 , 42 , 43 , 44 ].

Quality improvement collaboratives (originally termed “breakthrough collaboratives” [ 45 ]), in which representatives from different healthcare organizations come together to address a common problem, identify best practice, set goals, share data and initiate and evaluate improvement efforts [ 46 ], are one model used to deliver system-wide quality improvement. It is widely assumed that these collaboratives work because—and to the extent that—they identify, interpret and implement high-quality evidence (e.g. from randomized controlled trials).

Research on why quality improvement collaboratives succeed or fail has produced the following list of critical success factors: taking a whole-system approach, selecting a topic and goal that fits with organizations’ priorities, fostering a culture of quality improvement (e.g. that quality is everyone’s job), engagement of everyone (including the multidisciplinary clinical team, managers, patients and families) in the improvement effort, clearly defining people’s roles and contribution, engaging people in preliminary groundwork, providing organizational-level support (e.g. chief executive endorsement, protected staff time, training and support for teams, resources, quality-focused human resource practices, external facilitation if needed), training in specific quality improvement techniques (e.g. plan-do-study-act cycle), attending to the human dimension (including cultivating trust and working to ensure shared vision and buy-in), continuously generating reliable data on both processes (e.g. current practice) and outcomes (clinical, satisfaction) and a “learning system” infrastructure in which knowledge that is generated feeds into individual, team and organizational learning [ 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 ].

The quality improvement collaborative approach has delivered many successes but it has been criticized at a theoretical level for over-simplifying the social science of human motivation and behaviour and for adopting a somewhat mechanical approach to the study of complex systems [ 55 , 56 ]. Adaptations of the original quality improvement methodology (e.g. from Sweden [ 57 , 58 ]) have placed greater emphasis on human values and meaning-making, on the grounds that reducing the complexities of a system-wide quality improvement effort to a set of abstract and generic “success factors” will miss unique aspects of the case such as historical path dependencies, personalities, framing and meaning-making and micropolitics [ 59 ].

Perhaps this explains why, when the abovementioned factors are met, a quality improvement collaborative’s success is more likely but is not guaranteed, as a systematic review demonstrated [ 60 ]. Some well-designed and well-resourced collaboratives addressing clear knowledge gaps produced few or no sustained changes in key outcome measures [ 49 , 53 , 60 , 61 , 62 ]. To identify why this might be, a detailed understanding of a service’s history, current challenges and contextual constraints is needed. This explains our decision, part-way through the study reported here, to collect rich contextual data on participating sites so as to better explain success or failure of our own collaborative.

Warranted and unwarranted variation in clinical practice

A generation ago, Wennberg described most variation in clinical practice as “unwarranted” (which he defined as variation in the utilization of health care services that cannot be explained by variation in patient illness or patient preferences) [ 63 ]. Others coined the term “postcode lottery” to depict how such variation allegedly impacted on health outcomes [ 64 ]. Wennberg and colleagues’ Atlas of Variation , introduced in 1999 [ 65 ], and its UK equivalent, introduced in 2010 [ 66 ], described wide regional differences in the rates of procedures from arthroscopy to hysterectomy, and were used to prompt services to identify and address examples of under-treatment, mis-treatment and over-treatment. Numerous similar initiatives, mostly based on hospital activity statistics, have been introduced around the world [ 66 , 67 , 68 , 69 ]. Sutherland and Levesque’s proposed framework for analysing variation, for example, has three domains: capacity (broadly, whether sufficient resources are allocated at organizational level and whether individuals have the time and headspace to get involved), evidence (the extent to which evidence-based guidelines exist and are followed), and agency (e.g. whether clinicians are engaged with the issue and the effect of patient choice) [ 70 ].

Whilst it is clearly a good idea to identify unwarranted variation in practice, it is also important to acknowledge that variation can be warranted . The very act of measuring and describing variation carries great rhetorical power, since revealing geographical variation in any chosen metric effectively frames this as a problem with a conceptually simple solution (reducing variation) that will appeal to both politicians and the public [ 71 ]. The temptation to expose variation (e.g. via visualizations such as maps) and address it in mechanistic ways should be resisted until we have fully understood the reasons why it exists, which may include perverse incentives, insufficient opportunities to discuss cases with colleagues, weak or absent feedback on practice, unclear decision processes, contested definitions of appropriate care and professional challenges to guidelines [ 72 ].

Research question, aims and objectives

Research question.

What is quality in long covid care and how can it best be achieved?

To identify best practice and reduce unwarranted variation in UK long covid services.

To explain aspects of variation in long covid services that are or may be warranted.

Our original objectives were to:

Establish a quality improvement collaborative for 10 long covid clinics across UK.

Use quality improvement methods in collaboration with patients and clinic staff to prioritize aspects of care to improve. For each priority topic, identify best (evidence-informed) clinical practice, measure performance in each clinic, compare performance with a best practice benchmark and improve performance.

Produce organizational case studies of participating long covid clinics to explain their origins, evolution, leadership, ethos, population served, patient pathways and place in the wider healthcare ecosystem.

Examine these case studies to explain variation in practice, especially in topics where the quality improvement cycle proves difficult to follow or has limited impact.

The LOCOMOTION study

LOCOMOTION (LOng COvid Multidisciplinary consortium Optimising Treatments and services across the NHS) was a 30-month multi-site case study of 10 long covid clinics (8 in England, 1 in Wales and 1 in Scotland), beginning in 2021, which sought to optimise long covid care. Each clinic offered multidisciplinary care to patients referred from primary or secondary care (and, in some cases, self-referred), and held regular multidisciplinary team (MDT) meetings, mostly online via Microsoft Teams, to discuss cases. A study protocol for LOCOMOTION, with details of ethical approvals, management, governance and patient involvement has been published [ 25 ]. The three main work packages addressed quality improvement, technology-supported patient self-management and phenotyping and symptom clustering. This paper reports on the first work package, focusing mainly on qualitative findings.

Setting up the quality improvement collaborative

We broadly followed standard methodology for “breakthrough” quality improvement collaboratives [ 44 , 45 ], with two exceptions. First, because of geographical distance, continuing pandemic precautions and developments in videoconferencing technology, meetings were held online. Second, unlike in the original breakthrough model, patients were included in the collaborative, reflecting the cultural change towards patient partnerships since the model was originally proposed 40 years ago.

Each site appointed a clinical research fellow (doctor, nurse or allied health professional) funded partly by the LOCOMOTION study and partly with clinical sessions; some were existing staff who were backfilled to take on a research role whilst others were new appointments. The quality improvement meetings were held approximately every 8 weeks on Microsoft Teams and lasted about 2 h; there was an agenda and a chair, and meetings were recorded with consent. The clinical research fellow from each clinic attended, sometimes joined by the clinical lead for that site. In the initial meeting, the group proposed and prioritized topics before merging their consensus with the list of priority topics generated separately by patients (there was much overlap but also some differences).

In subsequent meetings, participants attempted to reach consensus on how to define, measure and achieve quality for each priority topic in turn, implement this approach in their own clinic and monitor its impact. Clinical leads prepared illustrative clinical cases and summaries of the research evidence, which they presented using Microsoft Powerpoint; the group then worked towards consensus on the implications for practice through general discussion. Clinical research fellows assisted with literature searches, collected baseline data from their own clinic, prepared and presented anonymized case examples, and contributed to collaborative goal-setting for improvement. Progress on each topic was reviewed at a later meeting after an agreed interval.

An additional element of this work package was semi-structured interviews with 29 patients, recruited from 9 of the 10 participating sites, about their clinic experiences with a view to feeding into service improvement (in the other site, no patient volunteered).

Our patient advisory group initially met separately from the quality improvement collaborative. They designed a short survey of current practice and sent it to each clinic; the results of this informed a prioritization exercise for topics where they considered change was needed. The patient-generated list was tabled at the quality improvement collaborative discussions, but patients were understandably keen to join these discussions directly. After about 9 months, some patient advisory group members joined the regular collaborative meetings. This dynamic was not without its tensions, since sharing performance data requires trust and there were some concerns about confidentiality when real patient cases were discussed with other patients present.

How evidence-informed quality targets were set

At the time the study began, there were no published large-scale randomized controlled trials of any interventions for long covid. We therefore followed a model used successfully in other quality improvement efforts where research evidence was limited or absent or it did not translate unambiguously into models for current services. In such circumstances, the best evidence may be custom and practice in the best-performing units. The quality improvement effort becomes oriented to what one group of researchers called “potentially better practices”—that is, practices that are “developed through analysis of the processes of care, literature review, and site visits” (page 14) [ 73 ]. The idea was that facilitated discussion among clinical teams, drawing on published research where available but also incorporating clinical experience, established practice and systematic analysis of performance data across participating clinics would surface these “potentially better practices”—an approach which, though not formally tested in controlled trials, appears to be associated with improved outcomes [ 46 , 73 ].

Adding an ethnographic component

Following limited progress made on some topics that had been designated high priority, we interviewed all 10 clinical research fellows (either individually or, in two cases, with a senior clinician present) and 18 other clinic staff (five individually plus two groups of 5 and 8), along with additional informal discussions, to explore the challenges of implementing the changes that had been agreed. These interviews were not audiotaped but detailed notes were made and typed up immediately afterwards. It became evident that some aspects of what the collaborative had deemed “evidence-informed” care were contested by front-line clinic staff, perceived as irrelevant to the service they were delivering, or considered impossible to implement. To unpack these issues further, the research protocol was amended to include an ethnographic component.

TG and EL (academic general practitioners) and JLD (a qualitative researcher with a PhD in the patient experience) attended a total of 45 MDT meetings in participating clinics (mostly online or hybrid). Staff were informed in advance that there would be an observer present; nobody objected. We noted brief demographic and clinical details of cases discussed (but no identifying data), dilemmas and uncertainties on which discussions focused, and how different staff members contributed.

TG made 13 in-person visits to participating long covid clinics. Staff were notified in advance; all were happy to be observed. Visits lasted between 5 and 8 h (54 h in total). We observed support staff booking patients in and processing requests and referrals, and shadowed different clinical staff in turn as they saw patients. Patients were informed of our presence and its purpose beforehand and given the opportunity to decline (three of 53 patients approached did). We discussed aspects of each case with the clinician after the patient left. When invited, we took breaks with staff and used these as an opportunity to ask them informally what it was like working in the clinic.

Ethnographic observation, analysis and reporting was geared to generating a rich interpretive account of the clinical, operational and interpersonal features of each clinic—what Van Maanen calls an “impressionist tales” [ 74 ]. Our work was also guided by the principles set out by Golden-Biddle and Locke, namely authenticity (spending time in the field and basing interpretations on these direct observations), plausibility (creating a plausible account through rich persuasive description) and criticality (e.g. reflexively examining our own assumptions) [ 75 ]. Our collection and analysis of qualitative data was informed by our own professional backgrounds (two general practitioners, one physical therapist, two non-clinicians).

In both MDTs and clinics, we took contemporaneous notes by hand and typed these up immediately afterwards.

Data management and analysis

Typed interview notes and field notes from clinics were collated in a set of Word documents, one for each clinic attended. They were analysed thematically [ 76 ] with attention to the literature on quality improvement and variation (see “ Background ”). Interim summaries were prepared on each clinic, setting out the narrative of how it had been established, its ethos and leadership, setting and staffing, population served and key links with other parts of the local healthcare ecosystem.

Minutes and field notes from the quality improvement collaborative meetings were summarized topic by topic, including initial data collected by the researchers-in-residence, improvement actions taken (or attempted) in that clinic, and any follow-up data shared. Progress or lack of it was interpreted in relation to the contextual case summary for that clinic.

Patient cases seen in clinic, and those discussed by MDTs, were summarized as brief case narratives in Word documents. Using the constant comparative method [ 77 ], we produced an initial synthesis of the clinical picture and principles of management based on the first 10 patient cases seen, and refined this as each additional case was added. Demographic and brief clinical and social details were also logged on Excel spreadsheets. When writing up clinical cases, we used the technique of composite case construction (in which we drew on several actual cases to generate a fictitious one, thereby protecting anonymity whilst preserving key empirical findings [ 78 ]); any names reported in this paper are pseudonyms.

Member checking

A summary was prepared for each clinic, including a narrative of the clinic’s own history and a summary of key quality issues raised across the ten clinics. These summaries included examples from real cases in our dataset. These were shared with the clinical research fellow and a senior clinician from the clinic, and amended in response to feedback. We also shared these summaries with representatives from the patient advisory group.

Overview of dataset

This study generated three complementary datasets. First, the video recordings, minutes, and field notes of 12 quality improvement collaborative meetings, along with the evidence summaries prepared for these meetings and clinic summaries (e.g. descriptions of current practice, audits) submitted by the clinical research fellows. This dataset illustrated wide variation in practice, and (in many topics) gaps or ambiguities in the evidence base.

Second, interviews with staff ( n  = 30) and patients ( n  = 29) from the clinics, along with ethnographic field notes (approximately 100 pages) from 13 in-person clinic visits (54 h), including notes on 50 patient consultations (40 face-to-face, 6 telephone, 4 video). This dataset illustrated the heterogeneity among the ten participating clinics.

Third, field notes (approximately 100 pages), including discussions on 244 clinical cases from the 45 MDT meetings (49 h) that we observed. This dataset revealed further similarities and contrasts among clinics in how patients were managed. In particular, it illustrated how, for the complex patients whose cases were presented at these meetings, teams made sense of, and planned for, each case through multidisciplinary dialogue. This dialogue typically began with one staff member presenting a detailed clinical history along with a narrative of how it had affected the patient’s life and what was at stake for them (e.g. job loss), after which professionals from various backgrounds (nursing, physical therapy, occupational therapy, psychology, dietetics, and different medical specialties) joined in a discussion about what to do.

The ten participating sites are summarized in Table  1 .

In the next two sections, we explore two issues—difficulty defining best practice and the heterogeneous nature of the clinics—that were key to explaining why quality, when pursued in a 10-site collaborative, proved elusive. We then briefly summarize patients’ accounts of their experience in the clinics and give three illustrative examples of the elusiveness of quality improvement using selected topics that were prioritized in our collaborative: outcome measures, investigation of palpitations and management of fatigue. In the final section of the results, we describe how MDT deliberations proved crucial for local quality improvement. Further detail on clinical priority topics will be presented in a separate paper.

“Best practice” in long covid: uncertainty and conflict

The study period (September 2021 to December 2023) corresponded with an exponential increase in published research on long covid. Despite this, the quality improvement collaborative found few unambiguous recommendations for practice. This gap between what the research literature offered and what clinical practice needed was partly ontological (relating what long covid is ). One major bone of contention between patients and clinicians (also evident in discussions with our patient advisory group), for example, was how far (and in whom) clinicians should look for and attempt to treat the various metabolic abnormalities that had been documented in laboratory research studies. The literature on this topic was extensive but conflicting [ 20 , 21 , 22 , 23 , 24 , 79 , 80 , 81 , 82 ]; it was heavy on biological detail but light on clinical application.

Patients were often aware of particular studies that appeared to offer plausible molecular or cellular explanations for symptom clusters along with a drug (often repurposed and off-label) whose mechanism of action appeared to be a good fit with the metabolic chain of causation. In one clinic, for example, we were shown an email exchange between a patient (not medically qualified) and a consultant, in which the patient asked them to reconsider their decision not to prescribe low-dose naltrexone, an opioid receptor antagonist with anti-inflammatory properties. The request included a copy of a peer-reviewed academic paper describing a small, uncontrolled pre-post study (i.e. a weak study design) in which this drug appeared to improve symptoms and functional performance in patients with long covid, as well as a mechanistic argument explaining why the patient felt this drug was a plausible choice in their own case.

This patient’s clinician, in common with most clinicians delivering front-line long covid services, considered that the evidence for such mechanism-based therapies was weak. Clinicians generally felt that this evidence, whilst promising, did not yet support routine measurement of clotting factors, antibodies, immune cells or other biomarkers or the prescription of mechanism-based therapies such as antivirals, anti-inflammatories or anticoagulants. Low-dose naltroxone, for example, is currently being tested in at least one randomized controlled trial (see National Clinical Trials Registry NCT05430152), which had not reported at the time of our observations.

Another challenge to defining best practice was the oft-repeated phrase that long covid is a “diagnosis by exclusion”, but the high prevalence of comorbidities meant that the “pure” long covid patient untainted by other potential explanations for their symptoms was a textbook ideal. In one MDT, for example, we observed a discussion about a patient who had had both swab-positive covid-19 and erythema migrans (a sign of Lyme disease) in the weeks before developing fatigue, yet local diagnostic criteria for each condition required the other to be excluded.

The logic of management in most participating clinics was pragmatic: prompt multidisciplinary assessment and treatment with an emphasis on obtaining a detailed clinical history (including premorbid health status), excluding serious complications (“red flags”), managing specific symptom clusters (for example, physical therapy for breathing pattern disorder), treating comorbidities (for example, anaemia, diabetes or menopause) and supporting whole-person rehabilitation [ 7 , 83 ]. The evidentiary questions raised in MDT discussions (which did not include patients) addressed the practicalities of the rehabilitation model (for example, whether cognitive therapy for neurocognitive complications is as effective when delivered online as it is when delivered in-person) rather than the molecular or cellular mechanisms of disease. For example, the question of whether patients with neurocognitive impairment should be tested for micro-clots or treated with anticoagulants never came up in the MDTs we observed, though we did visit a tertiary referral clinic (the tier 4 clinic in site H), whose lead clinician had a research interest in inflammatory coagulopathies and offered such tests to selected patients.

Because long covid typically produces dozens of symptoms that tend to be uniquely patterned in each patient, the uncertainties on which MDT discussions turned were rarely about general evidence of the kind that might be found in a guideline (e.g. how should fatigue be managed?). Rather they concerned particular case-based clinical decisions (e.g. how should this patient’s fatigue be managed, given the specifics of this case?). An example from our field notes illustrates this:

Physical therapist presents the case of a 39-year-old woman who works as a cleaner on an overnight ferry. Has had long covid for 2 years. Main symptoms are shortness of breath and possible anxiety attacks, especially when at work. She has had a course of physical therapy to teach diaphragmatic breathing but has found that focusing on her breathing makes her more anxious. Patient has to do a lot of bending in her job (e.g. cleaning toilets and under seats), which makes her dizzy, but Active Stand Test was normal. She also has very mild tricuspid incompetence [someone reads out a cardiology report—not hemodynamically significant].

Rehabilitation guidelines (e.g. WHO) recommend phased return to work (e.g. with reduced hours) and frequent breaks. “Tricky!” says someone. The job is intense and busy, and the patient can’t afford not to work. Discussion on whether all her symptoms can be attributed to tension and anxiety. Physical therapist who runs the breathing group says, “No, it’s long covid”, and describes severe initial covid-19 episode and results of serial chest X-rays which showed gradual clearing of ground glass shadows. Team discussion centers on how to negotiate reduced working hours in this particular job, given the overnight ferry shifts. --MDT discussion, Site D

This example raises important considerations about the nature of clinical knowledge in long covid. We return to it in the final section of the “ Results ” and in the “ Discussion ”.

Long covid clinics: a heterogeneous context for quality improvement

Most participating clinics had been established in mid-2020 to follow up patients who had been hospitalized (and perhaps ventilated) for severe acute covid-19. As mass vaccination reduced the severity of acute covid-19 for most people, the patient population in all clinics progressively shifted to include fewer “post-ICU [intensive care unit]” patients (in whom respiratory symptoms almost always dominated), and more people referred by their general practitioners or other secondary care specialties who had not been hospitalized for their acute covid-19 infection, and in whom fatigue, brain fog and palpitations were often the most troubling symptoms. Despite these similarities, the ten clinics had very different histories, geographical and material settings, staffing structures, patient pathways and case mix, as Table  1 illustrates. Below, we give more detail on three example sites.

Site C was established as a generalist “assessment-only” service by a general practitioner with an interest in infectious diseases. It is led jointly by that general practitioner and an occupational therapist, assisted by a wide range of other professionals including speech and language therapy, dietetics, clinical psychology and community-based physical therapy and occupational therapy. It has close links with a chronic fatigue service and a pain clinic that have been running in the locality for over 20 years. The clinic, which is entirely virtual (staff consult either from home or from a small side office in the community trust building), is physically located in a low-rise building on the industrial outskirts of a large town, sharing office space with various community-based health and social care services. Following a 1-h telephone consultation by one of the clinical leads, each patient is discussed at the MDT and then either discharged back to their general practitioner with a detailed management plan or referred on to one of the specialist services. This arrangement evolved to address a particular problem in this locality—that many patients with long covid were being referred by their general practitioner to multiple specialties (e.g. respiratory, neurology, fatigue), leading to a fragmented patient experience, unnecessary specialist assessments and wasteful duplication. The generalist assessment by telephone is oriented to documenting what is often a complex illness narrative (including pre-existing physical and mental comorbidities) and working with the patient to prioritize which symptoms or problems to pursue in which order.

Site E, in a well-regarded inner-city teaching hospital, had been set up in 2020 by a respiratory physician. Its initial ethos and rationale had been “respiratory follow-up”, with strong emphasis on monitoring lung damage via repeated imaging and lung function tests and in ensuring that patients received specialist physical therapy to “re-learn” efficient breathing techniques. Over time, this site has tried to accommodate a more multi-system assessment, with the introduction of a consultant-led infectious disease clinic for patients without a dominant respiratory component, reflecting the shift towards a more fatigue-predominant case mix. At the time of our fieldwork, each patient was seen in turn by a physician, psychologist, occupational therapist and respiratory physical therapist (half an hour each) before all four staff reconvened in a face-to-face MDT meeting to form a plan for each patient. But whilst a wide range of patients with diverse symptoms were discussed at these meetings, there remained a strong focus on respiratory pathology (e.g. tracking improvements in lung function and ensuring that coexisting asthma was optimally controlled).

Site F, one of the first long covid clinics in UK, was set up by a rehabilitation consultant who had been drafted to work on the ICU during the first wave of covid-19 in early 2020. He had a longstanding research interest in whole-patient rehabilitation, especially the assessment and management of chronic fatigue and pain. From the outset, clinic F was more oriented to rehabilitation, including vocational rehabilitation to help patients return to work. There was less emphasis on monitoring lung function or pursuing respiratory comorbidities. At the time of our fieldwork, clinic F offered both a community-based service (“tier 2”) led by an occupational therapist, supported by a respiratory physical therapist and psychologist, and a hospital-based service (“tier 3”) led by the rehabilitation consultant, supported by a wider MDT. Staff in both tiers emphasized that each patient needs a full physical and mental assessment and help to set and work towards achievable goals, whilst staying within safe limits so as to avoid post-exertional symptom exacerbation. Because of the research interest of the lead physician, clinic F adapted well to the growing numbers of patients with fatigue and quickly set up research studies on this cohort [ 84 ].

Details of the other seven sites are shown in Table  1 . Broadly speaking, sites B, E, G and H aligned with the “respiratory follow-up” model and sites F and I aligned with the “rehabilitation” model. Sites A and J had a high-volume, multi-tiered service whose community tier aligned with the “holistic GP assessment” model (site C above) and which also offered a hospital-based, rehabilitation-focused tier. The small service in Scotland (site D) had evolved from an initial respiratory focus to become part of the infectious diseases (ME/CFS) service; Lyme disease (another infectious disease whose sequelae include chronic fatigue) was also prevalent in this region.

The patient experience

Whilst the 10 participating clinics were very diverse in staffing, ethos and patient flows, the 29 patient interviews described remarkably consistent clinic experiences. Almost all identified the biggest problem to be the extended wait of several months before they were seen and the limited awareness (when initially referred) of what long covid clinics could provide. Some talked of how they cried with relief when they finally received an appointment. When the quality improvement collaborative was initially established, waiting times and bottlenecks were patients’ the top priority for quality improvement, and this ranking was shared by clinic staff, who were very aware of how much delays and uncertainties in assessment and treatment compounded patients’ suffering. This issue resolved to a large extent over the study period in all clinics as the referral backlog cleared and the incidence of new cases of long covid fell [ 85 ]; it will be covered in more detail in a separate publication.

Most patients in our sample were satisfied with the care they received when they were finally seen in clinic, especially how they finally felt “heard” after a clinician took a full history. They were relieved to receive affirmation of their experience, a diagnosis of what was wrong and reassurance that they were believed. They were grateful for the input of different members of the multidisciplinary teams and commented on the attentiveness, compassion and skill of allied professionals in particular (“she was wonderful, she got me breathing again”—patient BIR145 talking about a physical therapist). One or two patient participants expressed confusion about who exactly they had seen and what advice they had been given, and some did not realize that a telephone assessment had been an actual clinical consultation. A minority expressed disappointment that an expected investigation had not been ordered (one commented that they had not had any blood tests at all). Several had assumed that the help and advice from the long covid clinic would continue to be offered until they were better and were disappointed that they had been discharged after completing the various courses on offer (since their clinic had been set up as an “assessment only” service).

In the next sections, we give examples of topics raised in the quality improvement collaborative and how they were addressed.

Example quality topic 1: Outcome measures

The first topic considered by the quality improvement collaborative was how (that is, using which measures and metrics) to assess and monitor patients with long covid. In the absence of a validated biomarker, various symptom scores and quality of life scales—both generic and disease-specific—were mooted. Site F had already developed and validated a patient-reported outcome measure (PROM), the C19-YRS (Covid-19 Yorkshire Rehabilitation Scale) and used it for both research and clinical purposes [ 86 ]. It was quickly agreed that, for the purposes of generating comparative research findings across the ten clinics, the C19-YRS should be used at all sites and completed by patients three-monthly. A commercial partner produced an electronic version of this instrument and an app for patient smartphones. The quality improvement collaborative also agreed that patients should be asked to complete the EUROQOL EQ5D, a widely used generic health-related quality of life scale [ 87 ], in order to facilitate comparisons between long covid and other chronic conditions.

In retrospect, the discussions which led to the unopposed adoption of these two measures as a “quality” initiative in clinical care were somewhat aspirational. A review of progress at a subsequent quality improvement meeting revealed considerable variation among clinics, with a wide variety of measures used in different clinics to different degrees. Reasons for this variation were multiple. First, although our patient advisory group were keen that we should gather as much data as possible on the patient experience of this new condition, many clinic patients found the long questionnaires exhausting to complete due to cognitive impairment and fatigue. In addition, whilst patients were keen to answer questions on symptoms that troubled them, many had limited patience to fill out repeated surveys on symptoms that did not trouble them (“it almost felt as if I’ve not got long covid because I didn’t feel like I fit the criteria as they were laying it out”—patient SAL001). Staff assisted patients in completing the measures when needed, but this was time-consuming (up to 45 min per instrument) and burdensome for both staff and patients. In clinics where a high proportion of patients required assistance, staff time was the rate-limiting factor for how many instruments got completed. For some patients, one short instrument was the most that could be asked of them, and the clinician made a judgement on which one would be in their best interests on the day.

The second reason for variation was that the clinical diagnosis and management of particular features, complications and comorbidities of long covid required more nuance than was provided by these relatively generic instruments, and the level of detail sought varied with the specialist interest of the clinic (and the clinician). The modified C19-YRS [ 88 ], for example, contained 19 items, of which one asked about sleep quality. But if a patient had sleep difficulties, many clinicians felt that these needed to be documented in more detail—for example using the 8-item Epworth Sleepiness Scale, originally developed for conditions such as narcolepsy and obstructive sleep apnea [ 89 ]. The “Epworth score” was essential currency for referrals to some but not all specialist sleep services. Similarly, the C19-YRS had three items relating to anxiety, depression and post-traumatic stress disorder, but in clinics where there was a strong focus on mental health (e.g. when there was a resident psychologist), patients were usually invited to complete more specific tools (e.g. the Patient Health Questionnaire 9 [ 90 ], a 9-item questionnaire originally designed to assess severity of depression).

The third reason for variation was custom and practice. Ethnographic visits revealed that paper copies of certain instruments were routinely stacked on clinicians’ desks in outpatient departments and also (in some cases) handed out by administrative staff in waiting areas so that patients could complete them before seeing the clinician. These familiar clinic artefacts tended to be short (one-page) instruments that had a long tradition of use in clinical practice. They were not always fit for purpose. For example, the Nijmegen questionnaire was developed in the 1980s to assess hyperventilation; it was validated against a longer, “gold standard” instrument for that condition [ 91 ]. It subsequently became popular in respiratory clinics to diagnose or exclude breathing pattern disorder (a condition in which the normal physiological pattern of breathing becomes replaced with less efficient, shallower breathing [ 92 ]), so much so that the researchers who developed the instrument published a paper to warn fellow researchers that it had not been validated for this purpose [ 93 ]. Whilst a validated 17-item instrument for breathing pattern disorder (the Self-Evaluation of Breathing Questionnaire [ 94 ]) does exist, it is not in widespread clinical use. Most clinics in LOCOMOTION used Nijmegen either on all patients (e.g. as part of a comprehensive initial assessment, especially if the service had begun as a respiratory follow-up clinic) or when breathing pattern disorder was suspected.

In sum, the use of outcome measures in long covid clinics was a compromise between standardization and contingency. On the one hand, all clinics accepted the need to use “validated” instruments consistently. On the other hand, there were sometimes good reasons why they deviated from agreed practice, including mismatch between the clinic’s priorities as a research site, its priorities as a clinical service, and the particular clinical needs of a patient; the clinic’s—and the clinician’s—specialist focus; and long-held traditions of using particular instruments with which staff and patients were familiar.

Example quality topic 2: Postural orthostatic tachycardia syndrome (POTS)

Palpitations (common in long covid) and postural orthostatic tachycardia syndrome (POTS, a disproportionate acceleration in heart rate on standing, the assumed cause of palpitations in many long covid patients) was the top priority for quality improvement identified by our patient advisory group. Reflecting discussions and evidence (of various kinds) shared in online patient communities, the group were confident that POTS is common in long covid patients and that many cases remain undetected (perhaps misdiagnosed as anxiety). Their request that all long covid patients should be “screened” for POTS prompted a search for, and synthesis of, evidence (which we published in the BMJ [ 95 ]). In sum, that evidence was sparse and contested, but, combined with standard practice in specialist clinics, broadly supported the judicious use of the NASA Lean Test [ 96 ]. This test involves repeated measurements of pulse and blood pressure with the patient first lying and then standing (with shoulders resting against a wall).

The patient advisory group’s request that the NASA Lean Test should be conducted on all patients met with mixed responses from the clinics. In site F, the lead physician had an interest in autonomic dysfunction in chronic fatigue and was keen; he had already published a paper on how to adapt the NASA Lean Test for self-assessment at home [ 97 ]. Several other sites were initially opposed. Staff at site E, for example, offered various arguments:

The test is time-consuming, labor-intensive, and takes up space in the clinic which has an opportunity cost in terms of other potential uses;

The test is unvalidated and potentially misleading (there is a high incidence of both false negative and false positive results);

There is no proven treatment for POTS, so there is no point in testing for it;

It is a specialist test for a specialist condition, so it should be done in a specialist clinic where its benefits and limitations are better understood;

Objective testing does not change clinical management since what we treat is the patient’s symptoms (e.g. by a pragmatic trial of lifestyle measures and medication);

People with symptoms suggestive of dysautonomia have already been “triaged out” of this clinic (that is, identified in the initial telephone consultation and referred directly to neurology or cardiology);

POTS is a manifestation of the systemic nature of long covid; it does not need specific treatment but will improve spontaneously as the patient goes through standard interventions such as active pacing, respiratory physical therapy and sleep hygiene;

Testing everyone, even when asymptomatic, runs counter to the ethos of rehabilitation, which is to “de-medicalize” patients so as to better orient them to their recovery journey.

When clinics were invited to implement the NASA Lean Test on a consecutive sample of patients to resolve a dispute about the incidence of POTS (from “we’ve only seen a handful of people with it since the clinic began” to “POTS is common and often missed”), all but one site agreed to participate. The tertiary POTS centre linked to site H was already running the NASA Lean Test as standard on all patients. Site C, which operated entirely virtually, passed the work to the referring general practitioner by making this test a precondition for seeing the patient; site D, which was largely virtual, sent instructions for patients to self-administer the test at home.

The NASA Lean Test study has been published separately [ 98 ]. In sum, of 277 consecutive patients tested across the eight clinics, 20 (7%) had a positive NASA Lean Test for POTS and a further 28 (10%) a borderline result. Six of 20 patients who met the criteria for POTS on testing had no prior history of orthostatic intolerance. The question of whether this test should be used to “screen” all patients was not answered definitively. But the experience of participating in the study persuaded some sceptics that postural changes in heart rate could be severe in some long covid patients, did not appear to be fully explained by their previously held theories (e.g. “functional”, anxiety, deconditioning), and had likely been missed in some patients. The outcome of this particular quality improvement cycle was thus not a wholescale change in practice (for which the evidence base was weak) but a more subtle increase in clinical awareness, a greater willingness to consider testing for POTS and a greater commitment to contribute to research into this contested condition.

More generally, the POTS audit prompted some clinicians to recognize the value of quality improvement in novel clinical areas. One physician who had initially commented that POTS was not seen in their clinic, for example, reflected:

“ Our clinic population is changing. […] Overall there’s far fewer post-ICU patients with ECMO [extra-corporeal membrane oxygenation] issues and far more long covid from the community, and this is the bit our clinic isn’t doing so well on. We’re doing great on breathing pattern disorder; neuro[logists] are helping us with the brain fogs; our fatigue and occupational advice is ok but some of the dysautonomia symptoms that are more prevalent in the people who were not hospitalized – that’s where we need to improve .” -Respiratory physician, site G (from field visit 6.6.23)

Example quality topic 3: Management of fatigue

Fatigue was the commonest symptom overall and a high priority among both patients and clinicians for quality improvement. It often coexisted with the cluster of neurocognitive symptoms known as brain fog, with both conditions relapsing and remitting in step. Clinicians were keen to systematize fatigue management using a familiar clinical framework oriented around documenting a full clinical history, identifying associated symptoms, excluding or exploring comorbidities and alternative explanations (e.g. poor sleep patterns, depression, menopause, deconditioning), assessing how fatigue affects physical and mental function, implementing a program of physical and cognitive therapy that was sensitive to the patient’s condition and confidence level, and monitoring progress using validated patient-reported outcome measures and symptom diaries.

The underpinning logic of this approach, which broadly reflected World Health Organization guidance [ 99 ], was that fatigue and linked cognitive impairment could be a manifestation of many—perhaps interacting—conditions but that a whole-patient (body and mind) rehabilitation program was the cornerstone of management in most cases. Discussion in the quality improvement collaborative focused on issues such as whether fatigue was so severe that it produced safety concerns (e.g. in a person’s job or with childcare), the pros and cons of particular online courses such as yoga, relaxation and mindfulness (many were viewed positively, though the evidence base was considered weak), and the extent to which respiratory physical therapy had a crossover impact on fatigue (systematic reviews suggested that it may do, but these reviews also cautioned that primary studies were sparse, methodologically flawed, and heterogeneous [ 100 , 101 ]). They also debated the strengths and limitations of different fatigue-specific outcome measures, each of which had been developed and validated in a different condition, with varying emphasis on cognitive fatigue, physical fatigue, effect on daily life, and motivation. These instruments included the Modified Fatigue Impact Scale; Fatigue Severity Scale [ 102 ]; Fatigue Assessment Scale; Functional Assessment Chronic Illness Therapy—Fatigue (FACIT-F) [ 103 ]; Work and Social Adjustment Scale [ 104 ]; Chalder Fatigue Scale [ 105 ]; Visual Analogue Scale—Fatigue [ 106 ]; and the EQ5D [ 87 ]. In one clinic (site F), three of these scales were used in combination for reasons discussed below.

Some clinicians advocated melatonin or nutritional supplements (such as vitamin D or folic acid) for fatigue on the grounds that many patients found them helpful and formal placebo-controlled trials were unlikely ever to be conducted. But neurostimulants used in other fatigue-predominant conditions (e.g. brain injury, stroke), which also lacked clinical trial evidence in long covid, were viewed as inappropriate in most patients because of lack of evidence of clear benefit and hypothetical risk of harm (e.g. adverse drug reactions, polypharmacy).

Whilst the patient advisory group were broadly supportive of a whole-patient rehabilitative approach to fatigue, their primary concern was fatiguability , especially post-exertional symptom exacerbation (PESE, also known as “crashes”). In these, the patient becomes profoundly fatigued some hours or days after physical or mental exertion, and this state can last for days or even weeks [ 107 ]. Patients viewed PESE as a “red flag” symptom which they felt clinicians often missed and sometimes caused. They wanted the quality improvement effort to focus on ensuring that all clinicians were aware of the risks of PESE and acted accordingly. A discussion among patients and clinicians at a quality improvement collaborative meeting raised a new research hypothesis—that reducing the number of repeated episodes of PESE may improve the natural history of long covid.

These tensions around fatigue management played out differently in different clinics. In site C (the GP-led virtual clinic run from a community hub), fatigue was viewed as one manifestation of a whole-patient condition. The lead general practitioner used the metaphor of untangling a skein of wool: “you have to find the end and then gently pull it”. The underlying problem in a fatigued patient, for example, might be an undiagnosed physical condition such as anaemia, disturbed sleep, or inadequate pacing. These required (respectively) the chronic fatigue service (comprising an occupational therapist and specialist psychologist and oriented mainly to teaching the techniques of goal-setting and pacing), a “tiredness” work-up (e.g. to exclude anaemia or menopause), investigation of poor sleep (which, not uncommonly, was due to obstructive sleep apnea), and exploration of mental health issues.

In site G (a hospital clinic which had evolved from a respiratory service), patients with fatigue went through a fatigue management program led by the occupational therapist with emphasis on pacing, energy conservation, avoidance of PESE and sleep hygiene. Those without ongoing respiratory symptoms were often discharged back to their general practitioner once they had completed this; there was no consultant follow-up of unresolved fatigue.

In site F (a rehabilitation clinic which had a longstanding interest in chronic fatigue even before the pandemic), active interdisciplinary management of fatigue was commenced at or near the patient’s first visit, on the grounds that the earlier this began, the more successful it would be. In this clinic, patients were offered a more intensive package: a similar occupational therapy-led fatigue course as those in site G, plus input from a dietician to advise on regular balanced meals and caffeine avoidance and a group-based facilitated peer support program which centred on fatigue management. The dietician spoke enthusiastically about how improving diet in longstanding long covid patients often improved fatigue (e.g. because they had often lost muscle mass and tended to snack on convenience food rather than make meals from scratch), though she agreed there was no evidence base from trials to support this approach.

Pursuing local quality improvement through MDTs

Whilst some long covid patients had “textbook” symptoms and clinical findings, many cases were unique and some were fiendishly complex. One clinician commented that, somewhat paradoxically, “easy cases” were often the post-ICU follow-ups who had resolving chest complications; they tended to do well with a course of respiratory physical therapy and a return-to-work program. Such cases were rarely brought to MDT meetings. “Difficult cases” were patients who had not been hospitalized for their acute illness but presented with a months- or years-long history of multiple symptoms with fatigue typically predominant. Each one was different, as the following example (some details of which have been fictionalized to protect anonymity) illustrates.

The MDT is discussing Mrs Fermah, a 65-year-old homemaker who had covid-19 a year ago. She has had multiple symptoms since, including fluctuating fatigue, brain fog, breathlessness, retrosternal chest pain of burning character, dry cough, croaky voice, intermittent rashes (sometimes on eating), lips going blue, ankle swelling, orthopnoea, dizziness with the room spinning which can be triggered by stress, low back pain, aches and pains in the arms and legs and pins and needles in the fingertips, loss of taste and smell, palpitations and dizziness (unclear if postural, but clear association with nausea), headaches on waking, and dry mouth. She is somewhat overweight (body mass index 29) and admits to low mood. Functionally, she is mostly confined to the house and can no longer manage the stairs so has begun to sleep downstairs. She has stumbled once or twice but not fallen. Her social life has ceased and she rarely has the energy to see her grandchildren. Her 70-year-old husband is retired and generally supportive, though he spends most evenings at his club. Comorbidities include glaucoma which is well controlled and overseen by an ophthalmologist, mild club foot (congenital) and stage 1 breast cancer 20 years ago. Various tests, including a chest X-ray, resting and exercise oximetry and a blood panel, were normal except for borderline vitamin D level. Her breathing questionnaire score suggests she does not have breathing pattern disorder. ECG showed first-degree atrioventricular block and left axis deviation. No clinician has witnessed the blue lips. Her current treatment is online group respiratory physical therapy; a home visit is being arranged to assess her climbing stairs. She has declined a psychologist assessment. The consultant asks the nurse who assessed her: “Did you get a feel if this is a POTS-type dizziness or an ENT-type?” She sighs. “Honestly it was hard to tell, bless her.”—Site A MDT

This patient’s debilitating symptoms and functional impairments could all be due to long covid, yet “evidence-based” guidance for how to manage her complex suffering does not exist and likely never will exist. The question of which (if any) additional blood or imaging tests to do, in what order of priority, and what interventions to offer the patient will not be definitively answered by consulting clinical trials involving hundreds of patients, since (even if these existed) the decision involves weighing this patient’s history and the multiple factors and uncertainties that are relevant in her case. The knowledge that will help the MDT provide quality care to Mrs Fermah is case-based knowledge—accumulated clinical experience and wisdom from managing and deliberating on multiple similar cases. We consider case-based knowledge further in the “ Discussion ”.

Summary of key findings

This study has shown that a quality improvement collaborative of UK long covid clinics made some progress towards standardizing assessment and management in some topics, but some variation remained. This could be explained in part by the fact that different clinics had different histories and path dependencies, occupied a different place in the local healthcare ecosystem, served different populations, were differently staffed, and had different clinical interests. Our patient advisory group and clinicians in the quality improvement collaborative broadly prioritized the same topics for improvement but interpreted them somewhat differently. “Quality” long covid care had multiple dimensions, relating to (among other things) service set-up and accessibility, clinical provision appropriate to the patient’s need (including options for referral to other services locally), the human qualities of clinical and support staff, how knowledge was distributed across (and accessible within) the system, and the accumulated collective wisdom of local MDTs in dealing with complex cases (including multiple kinds of specialist expertise as well as relational knowledge of what was at stake for the patient). Whilst both staff and patients were keen to contribute to the quality improvement effort, the burden of measurement was evident: multiple outcome measures, used repeatedly, were resource-intensive for staff and exhausting for patients.

Strengths and limitations of this study

To our knowledge, we are the first to report both a quality improvement collaborative and an in-depth qualitative study of clinical work in long covid. Key strengths of this work include the diverse sampling frame (with sites from three UK jurisdictions and serving widely differing geographies and demographics); the use of documents, interviews and reflexive interpretive ethnography to produce meaningful accounts of how clinics emerged and how they were currently organized; the use of philosophical concepts to analyse data on how MDTs produced quality care on a patient-by-patient basis; and the close involvement of patient co-researchers and coauthors during the research and writing up.

Limitations of the study include its exclusive UK focus (the external validity of findings to other healthcare systems is unknown); the self-selecting nature of participants in a quality improvement collaborative (our patient advisory group suggested that the MDTs observed in this study may have represented the higher end of a quality spectrum, hence would be more likely than other MDTs to adhere to guidelines); and the particular perspective brought by the researchers (two GPs, a physical therapist and one non-clinical person) in ethnographic observations. Hospital specialists or organizational scholars, for example, may have noticed different things or framed what they observed differently.

Explaining variation in long covid care

Sutherland and Levesque’s framework mentioned in the “ Background ” section does not explain much of the variation found in our study [ 70 ]. In terms of capacity, at the time of this study most participating clinics benefited from ring-fenced resources. In terms of evidence, guidelines existed and were not greatly contested, but as illustrated by the case of Mrs Fermah above, many patients were exceptions to the guideline because of complex symptomatology and relevant comorbidities. In terms of agency, clinicians in most clinics were passionately engaged with long covid (they were pioneers who had set up their local clinic and successfully bid for national ring-fenced resources) and were generally keen to support patient choice (though not if the patient requested tests which were unavailable or deemed not indicated).

Astma et al.’s list of factors that may explain variation in practice (see “ Background ”) includes several that may be relevant to long covid, especially that the definition of appropriate care in this condition remains somewhat contested. But lack of opportunity to discuss cases was not a problem in the clinics in our sample. On the contrary, MDT meetings in each locality gave clinicians multiple opportunities to discuss cases with colleagues and reflect collectively on whether and how to apply particular guidelines.

The key problem was not that clinicians disputed the guidelines for managing long covid or were unaware of them; it was that the guidelines were not self-interpreting . Rather, MDTs had to deliberate on the balance of benefits and harms in different aspects of individual cases. In patients whose symptoms suggested a possible diagnosis of POTS (or who suspected themselves of having POTS), for example, these deliberations were sometimes lengthy and nuanced. Should a test result that is not technically in the abnormal range but close to it be treated as diagnostic, given that symptoms point to this diagnosis? If not, should the patient be told that the test excludes POTS or that it is equivocal? If a cardiology opinion has stated firmly that the patient does not have POTS but the cardiologist is not known for their interest in this condition, should a second specialist opinion be sought? If the gold standard “tilt test” [ 108 ] for POTS (usually available only in tertiary centres) is not available locally, does this patient merit a costly out-of-locality referral? Should the patient’s request for a trial of off-label medication, reflecting discussions in an online support group, be honoured? These are the kinds of questions on which MDTs deliberated at length.

The fact that many cases required extensive deliberation does not necessarily justify variation in practice among clinics. But taking into account the clinics’ very different histories, set-up, and local referral pathways, the variation begins to make sense. A patient who is being assessed in a clinic that functions as a specialist chronic fatigue centre and attracts referrals which reflect this interest (e.g. site F in our sample) will receive different management advice from one that functions as a telephone-only generalist assessment centre and refers on to other specialties (site C in our sample). The wide variation in case mix, coupled with the fact that a different proportion of these cases were highly complex in each clinic (and in different ways), suggests that variation in practice may reflect appropriate rather than inappropriate care.

Our patient advisory group affirmed that many of the findings reported here resonated with their own experience, but they raised several concerns. These included questions about patient groups who may have been missed in our sample because they were rarely discussed in MDTs. The decision to take a case to MDT discussion is taken largely by a clinician, and there was evidence from online support groups that some patients’ requests for their case to be taken to an MDT had been declined (though not, to our knowledge, in the clinics participating in the LOCOMOTION study).

We began this study by asking “what is quality in long covid care?”. We initially assumed that this question referred to a generalizable evidence base, which we felt we could identify, and we believed that we could then determine whether long covid clinics were following the evidence base through conventional audits of structure, process, and outcome. In retrospect, these assumptions were somewhat naïve. On the basis of our findings, we suggest that a better (and more individualized) research question might be “to what extent does each patient with long covid receive evidence-based care appropriate to their needs?”. This question would require individual case review on a sample of cases, tracking each patient longitudinally including cross-referrals, and also interviewing the patient.

Nomothetic versus idiographic knowledge

In a series of lectures first delivered in the 1950s and recently republished [ 109 ], psychiatrist Dr Maurice O’Connor Drury drew on the later philosophy of his friend and mentor Ludwig Wittgenstein to challenge what he felt was a concerning trend: that the nomothetic (generalizable, abstract) knowledge from randomized controlled trials (RCTs) was coming to over-ride the idiographic (personal, situated) knowledge about particular patients. Based on Wittgenstein’s writings on the importance of the particular, Drury predicted—presciently—that if implemented uncritically, RCTs would result in worse, not better, care for patients, since it would go hand-in-hand with a downgrading of experience, intuition, subjective judgement, personal reflection, and collective deliberation.

Much conventional quality improvement methodology is built on an assumption that nomothetic knowledge (for example, findings from RCTs and systematic reviews) is a higher form of knowing than idiographic knowledge. But idiographic, case-based reasoning—despite its position at the very bottom of evidence-based medicine’s hierarchy of evidence [ 110 ]—is a legitimate and important element of medical practice. Bioethicist Kathryn Montgomery, drawing on Aristotle’s notion of praxis , considers clinical practice to be an example of case-based reasoning [ 111 ]. Medicine is governed not by hard and fast laws but by competing maxims or rules of thumb ; the essence of judgement is deciding which (if any) rule should be applied in a particular circumstance. Clinical judgement incorporates science (especially the results of well-conducted research) and makes use of available tools and technologies (including guidelines and decision-support algorithms that incorporate research findings). But rather than being determined solely by these elements, clinical judgement is guided both by the scientific evidence and by the practical and ethical question “what is it best to do, for this individual, given these circumstances?”.

In this study, we observed clinical management of, and MDT deliberations on, hundreds of clinical cases. In the more straightforward ones (for example, recovering pneumonitis), guideline-driven care was not difficult to implement and such cases were rarely brought to the MDT. But cases like Mrs Fermah (see last section of “ Results ”) required much discussion on which aspects of which guideline were in the patient’s best interests to bring into play at any particular stage in their illness journey.

Conclusions

One systematic review on quality improvement collaboratives concluded that “ [those] reporting success generally addressed relatively straightforward aspects of care, had a strong evidence base and noted a clear evidence-practice gap in an accepted clinical pathway or guideline” (page 226) [ 60 ]. The findings from this study suggest that to the extent that such collaboratives address clinical cases that are not straightforward, conventional quality improvement methods may be less useful and even counterproductive.

The question “what is quality in long covid care?” is partly a philosophical one. Our findings support an approach that recognizes and values idiographic knowledge —including establishing and protecting a safe and supportive space for deliberation on individual cases to occur and to value and draw upon the collective learning that occurs in these spaces. It is through such deliberation that evidence-based guidelines can be appropriately interpreted and applied to the unique needs and circumstances of individual patients. We suggest that Drury’s warning about the limitations of nomothetic knowledge should prompt a reassessment of policies that rely too heavily on such knowledge, resulting in one-size-fits-all protocols. We also cautiously hypothesize that the need to centre the quality improvement effort on idiographic rather than nomothetic knowledge is unlikely to be unique to long covid. Indeed, such an approach may be particularly important in any condition that is complex, unpredictable, variable in presentation and clinical course, and associated with comorbidities.

Availability of data and materials

Selected qualitative data (ensuring no identifiable information) will be made available to formal research teams on reasonable request to Professor Greenhalgh at the University of Oxford, on condition that they have research ethics approval and relevant expertise. The quantitative data on NASA Lean Test have been published in full in a separate paper [ 98 ].

Abbreviations

Chronic fatigue syndrome

Intensive care unit

Jenny Ceolta-Smith

Julie Darbyshire

LOng COvid Multidisciplinary consortium Optimising Treatments and services across the NHS

Multidisciplinary team

Myalgic encephalomyelitis

Middle East Respiratory Syndrome

National Aeronautics and Space Association

Occupational therapy/ist

Post-exertional symptom exacerbation

Postural orthostatic tachycardia syndrome

Speech and language therapy

Severe Acute Respiratory Syndrome

Trisha Greenhalgh

United Kingdom

United States

World Health Organization

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Acknowledgements

We are grateful to clinic staff for allowing us to study their work and to patients for allowing us to sit in on their consultations. We also thank the funder of LOCOMOTION (National Institute for Health Research) and the patient advisory group for lived experience input.

This research is supported by National Institute for Health Research (NIHR) Long Covid Research Scheme grant (Ref COV-LT-0016).

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Trisha Greenhalgh, Julie L. Darbyshire & Emma Ladds

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Contributions

TG conceptualized the overall study, led the empirical work, supported the quality improvement meetings, conducted the ethnographic visits, led the data analysis, developed the theorization and wrote the first draft of the paper. JLD organized and led the quality improvement meetings, supported site-based researchers to collect and analyse data on their clinic, collated and summarized data on quality topics, and liaised with the patient advisory group. CL conceptualized and led the quality topic on POTS, including exploring reasons for some clinics’ reluctance to conduct testing and collating and analysing the NASA Lean Test data across all sites. EL assisted with ethnographic visits, data analysis, and theorization. JCS contributed lived experience of long covid and also clinical experience as an occupational therapist; she liaised with the wider patient advisory group, whose independent (patient-led) audit of long covid clinics informed the quality improvement prioritization exercise. All authors provided extensive feedback on drafts and contributed to discussions and refinements. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Trisha Greenhalgh .

Ethics declarations

Ethics approval and consent to participate.

LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS study is sponsored by the University of Leeds and approved by Yorkshire & The Humber—Bradford Leeds Research Ethics Committee (ref: 21/YH/0276) and subsequent amendments.

Patient participants in clinic were approached by the clinician (without the researcher present) and gave verbal informed consent for a clinically qualified researcher to observe the consultation. If they consented, the researcher was then invited to sit in. A written record was made in field notes of this verbal consent. It was impractical to seek consent from patients whose cases were discussed (usually with very brief clinical details) in online MDTs. Therefore, clinical case examples from MDTs presented in the paper are fictionalized cases constructed from multiple real cases and with key clinical details changed (for example, comorbidities were replaced with different conditions which would produce similar symptoms). All fictionalized cases were checked by our patient advisory group to check that they were plausible to lived experience experts.

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No direct patient cases are reported in this manuscript. For details of how the fictionalized cases were constructed and validated, see “Consent to participate” above.

Competing interests

TG was a member of the UK National Long Covid Task Force 2021–2023 and on the Oversight Group for the NICE Guideline on Long Covid 2021–2022. She is a member of Independent SAGE.

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Greenhalgh, T., Darbyshire, J.L., Lee, C. et al. What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography. BMC Med 22 , 159 (2024). https://doi.org/10.1186/s12916-024-03371-6

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DOI : https://doi.org/10.1186/s12916-024-03371-6

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Case Study: How Aggressively Should a Bank Pursue AI?

• Thomas H. Davenport
• George Westerman

A Malaysia-based CEO weighs the risks and potential benefits of turning a traditional bank into an AI-first institution.

Siti Rahman, the CEO of Malaysia-based NVF Bank, faces a pivotal decision. Her head of AI innovation, a recent recruit from Google, has a bold plan. It requires a substantial investment but aims to transform the traditional bank into an AI-first institution, substantially reducing head count and the number of branches. The bank’s CFO worries they are chasing the next hype cycle and cautions against valuing efficiency above all else. Siti must weigh the bank’s mixed history with AI, the resistance to losing the human touch in banking services, and the risks of falling behind in technology against the need for a prudent, incremental approach to innovation.

Two experts offer advice: Noemie Ellezam-Danielo, the chief digital and AI strategy at Société Générale, and Sastry Durvasula, the chief information and client services officer at TIAA.

Siti Rahman, the CEO of Malaysia-headquartered NVF Bank, hurried through the corridors of the university’s computer engineering department. She had directed her driver to the wrong building—thinking of her usual talent-recruitment appearances in the finance department—and now she was running late. As she approached the room, she could hear her head of AI innovation, Michael Lim, who had joined NVF from Google 18 months earlier, breaking the ice with the students. “You know, NVF used to stand for Never Very Fast,” he said to a few giggles. “But the bank is crawling into the 21st century.”

• Thomas H. Davenport is the President’s Distinguished Professor of Information Technology and Management at Babson College, a visiting scholar at the MIT Initiative on the Digital Economy, and a senior adviser to Deloitte’s AI practice. He is a coauthor of All-in on AI: How Smart Companies Win Big with Artificial Intelligence (Harvard Business Review Press, 2023).
• George Westerman is a senior lecturer at MIT Sloan School of Management and a coauthor of Leading Digital (HBR Press, 2014).

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