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We argue that the IPE literature on economic expertise has been characterised by 'methodological elitism' that makes it ill equipped to account for the influence of heterodox and grassroots forms of expertise. To remedy this, we posit a theoretical framework that emphasises the tensions between two forms of professional legitimacy. One is internal legitimacy and it is rooted in appeals to scientific objectivity, political neutrality and high professional barriers of entry. However, internal legitimacy may clash with external legitimacy, which is a function of a clear articulation of social purpose. Taking the surprising rise of Modern Monetary Theory as a case study, the paper makes two claims. First, its ideas did not coalesce into a distinctive heterodox brand of economics through traditional mechanisms like academic peer-review and citation networks, but through intense online activity. Second, the messaging that spurred MMT consistently combined constitutive claims with explicit declarations of social purpose. The result was an open project with a broad normative appeal, which successfully enrolled a large group of passionate followers and co-creators. To date, IPE scholars have been blind to such alternative forms of knowledge production. [ABSTRACT FROM AUTHOR]

This article delves into the underexplored relationship between lay expertise and temporality by analysing semi-structured interviews with parents who treat their autistic children using complementary and alternative medicine (CAM). The analysis indicates that time and temporalities play a significant role in how parents construct and enact their expertise. Faced with uncertainty, urgency, and inadequate support from medical and educational systems, parents assumed crucial responsibilities in managing their children’s therapies. Over time, they acquired knowledge and skills, ultimately claiming expertise in caring for their children, making therapy decisions and administering treatments. Parents engaged in complex time work as they attempted to orchestrate everyday, developmental, therapeutic, and social rhythms, alternating their focus between future and present. They endeavoured to synchronise their children’s rhythms with those of peers by using CAM therapies not yet adopted into conventional medicine, which they perceived as slow and outdated. This study contributes novel insights into autism care, temporalities of care, and the under-examined nexus between lay expertise and temporality. [ABSTRACT FROM AUTHOR]

Attention deficit hyperactivity disorder (ADHD) is a paradigmatic case for childhood medicalisation. Critical studies of medicalisation have pointed to the increasing clinical role of schools, with teachers tending to rely on medical treatment of students with ADHD and are perceived as a primary source of diagnostic information. Based on 27 semi‐structured interviews with teachers working in two Israeli elementary and middle schools, this research explored how teachers mediate the medicalisation process and understand their responsibilities in the classroom amidst the emphasis on inclusion in contemporary Israel. We found that teachers offer a wide range of explanations of the disorder and its prevalence, and their attitudes to medication are ambivalent. We argue that teachers develop pedagogical (lay) expertise in the field of ADHD in parallel with and in opposition to medical solutions. Such expertise is based on practical experience and close interaction with students. A top‐down ideological imperative of inclusion, combined with uncertainty about ADHD, has generated a bottom‐up set of preformative practices of 'containment' of troubled students. Teachers' emerging knowledge and practices raise questions about the relationship between medicalisation, policy, expertise and the pragmatic value of medical categories when applied outside the medical establishment. [ABSTRACT FROM AUTHOR]

Embodied health movements (EHMs) advance their agendas by mediating the production, circulation, and revision of biomedical knowledge. To do this, their constituents become lay experts by blending their embodied experience of illness with self-taught technical knowledge. However, it is unclear how lay expertise is routinized within EHMs, and consequently, to what extent it can be made durable in long-term partnerships with credentialed experts. I follow the OpenAPS community—a group of people with type one diabetes who engineered an open-source 'artificial pancreas'—from their inception in the transient #WeAreNotWaiting movement to their research collaborations with endocrinologists and detente with the FDA. I argue that OpenAPS user-contributors formalized their expertise in three steps: First, they broke the OpenAPS algorithm into modules so that prospective users must become experts to assemble it. Second, they lowered this barrier to entry by facilitating the socialization of new user-contributors with a training ritual. And third, they intervened in the strained endocrinologist-patient relationship. These tactics— restricting membership, reproducing expertise, and realigning interests—won the respect of credentialled experts who saw themselves in the OpenAPS community's image. While not all EHMs follow this trajectory, this case demonstrates that lay expertise can mature and assume new institutional forms without relying on commercialization or patronage. [ABSTRACT FROM AUTHOR]

Despite physicians' near monopoly over medicalization historically, various stakeholder groups shape an increasingly complex process today. This study examines a relatively new initiative, "health coaching," within the context of the changing nature of medicalization. Utilizing 51 in-depth interviews with attention deficit hyperactivity disorder (ADHD) coaches, participant observation from seven ADHD symposia, and ADHD coach publications, I examine coaching's emergence as a partial challenge to medicalization. Findings reveal a field comprised mainly of individuals personally affected by ADHD whose dissatisfaction with institutionalized framings and practices underpins a push for liminal medicalization. Members move between medical and nonmedical discourses to frame ADHD as a paradox of pathology and gift. Additionally, they leverage and commodify personal experience alongside institutional and alternative knowledge into an adjunct or substitute to medication and potential challenge to therapy—one aimed at "self-actualization" versus "treatment." Such efforts highlight (de)medicalization's dimensionality, simultaneous medicalization and demedicalization, and a lay-driven enterprise's role in such processes. [ABSTRACT FROM AUTHOR]

'Experiential knowledge' has been identified as a key epistemic resource used by lay people to contest medical authorities and build new knowledge related to health. The Internet has created unprecedented opportunities for such experience‐based epistemic projects. This article contributes to understandings of the as yet under‐theorised concept of experiential knowledge by analysing accounts of a group of Swedish women who claim that their use of contraceptive copper IUDs has led to systemic side effects not recognised by health care providers. Based on digital group interviews and written essays, we distinguish between three components or stages of experiential knowledge at work in the women's use of experience as an epistemic resource: somatic knowing, collective validation and self‐experimentation. Drawing on a critical realist framework, we defend a notion of experiential knowledge as crucially, while only partially, based on a bodily and practical access to aspects of reality organised by extra‐discursive principles. By providing theoretical complexity to the notion of experiential knowledge, we contribute resources for discriminating between and evaluating various experience‐based claims, something that is particularly needed in the current 'post‐truth' era where experience‐based knowledge claims pointing in divergent directions flourish. [ABSTRACT FROM AUTHOR]

This contribution introduces Current Sociology's special subsection 'The advent of the citizen expert: Democratising or pushing the boundaries of expertise?', which deals with the increasing involvement of 'ordinary citizens' as experts into political and social debates. From an integrated perspective that transcends policy fields and societal realms, the special subsection deals with the epistemic and democratic implications of this transformation in civic participation and knowledge validation practice. It pays special attention to the tensions that can be implied by citizen expertise's 'double promise' of tapping into novel channels of participation and idle knowledge resources at the same time. Three promising themes and research avenues are identified that the advent of the citizen expert highlights: The changes in liberal-democratic culture indicated by the emergence of this new actor category, the way societal power relations are impacted by the elevation of citizen expertise and the subsequently shifting boundaries and standards of what can count as knowledge or expertise. [ABSTRACT FROM AUTHOR]

This article proposes a pragmatist theorising of different repertoires of valuation as an analytical grid to understand how actors of participatory projects assess the value of citizen expert participation. It conducts justification analysis on interview data from 21 projects that engage citizens as lay experts in Finland to illustrate how this analytical approach helps explain the contradicting meanings assigned to the concept as well as the resulting possibilities for participation. The article identifies two main conflicts in which different justifications for citizen expertise become explicit: debates over who can be a citizen expert and what the scope of their participation should be. Our results show how in the Finnish context, industrial justifications are often used to bolster claims for the right to participate. However, the industrial value-base is also the most reoccurring object of critique, suggested to create a narrow and above-defined role of a citizen-engineer for the citizen experts. The article illustrates how the diverse justifications might lead to contradicting constructions of citizen expertise, contributing to conflicting expectations, ambiguous and tokenistic participation, and feelings of exclusion among policy actors. It argues for justification analysis as a tool to identify and compare these undergirding valuations across policy fields and contexts. [ABSTRACT FROM AUTHOR]

Initiatives that attribute expert status to 'ordinary citizens' proliferate in a range of societal realms and are generally celebrated for 'democratising expertise'. By tapping new sources of knowledge and participation simultaneously, such 'citizen expertise' practices seem to provide responses to the contemporary decline of trust in political elites and traditional experts that seriously challenges the legitimacy of democratic policy-making. This study distinguishes between three quintessential types of citizen expertise ('local knowledge', 'service user involvement' and 'citizen science') and, from an integrated perspective, critically discusses the value of citizen expertise for public knowledge production and democratic governance. Drawing on empirical insights and on theories of democracy and of expertise and knowledge, the concepts of expertise and participation are refined and quality conditions of citizen expertise are developed. The study argues that citizen expertise is epistemically particularly valuable when it is based on distinct, non-ubiquitous experiences and on collective, not just individual, insights. It contends that representativeness is key to the democratic legitimacy of citizen experts in the policy context and points to the key role of organised civil society in establishing the required accountability relationships. [ABSTRACT FROM AUTHOR]

The city government of Chicago adopted a 'racial equity' approach to tackle racial disparities in COVID‐19 outcomes. Drawing on experience addressing core vulnerabilities associated with HIV risk, Chicago public health experts who designed COVID‐19 mitigation initiatives recognised that the same social determinants of health drive racial disparities for both HIV and COVID‐19. Yet, when building an infrastructure to respond to COVID‐19, disease surveillance and data collection became the priority for investment ahead of other forms of public health work or the provision of social services. The building of a disease surveillance infrastructure that responded to and supplied data took precedence over addressing social determinants of poor health. Community‐based organisations that might have otherwise organised for social service provision were incorporated into this infrastructure. Further, public health officials often failed to heed the lessons learned from their experience with HIV vulnerability. Based on qualitative analysis of 56 interviews with public health experts and policymakers in Chicago, we argue that the prioritisation of disease surveillance, coupled with a scarcity model of public health provision, undermined the city's attempt to redress racial inequities in outcomes. We argue that the economisation of pandemic response exacerbates health disparities, even when racial equity frameworks are adopted. [ABSTRACT FROM AUTHOR]

When it comes to health-related information-seeking behavior, online communities play a key role for some groups, such as parents. With a case study of online communities in a loosely organized vaccination system, that of Austria, we study how parents make use of a prominent online forum (parents.at) in their vaccination trajectories and situate this analysis in its socio-political context. Based on inductive qualitative analysis of relevant threads (n = 27), we find that parents use forums in three ways: First, the forum serves as a platform through which parents seek orientation in a loosely organized and fragmented vaccination system. Second, the forum offers space for sharing, collecting, and evaluating different forms of expertise. In doing so, parents carve out a space in which they can comfortably put lay expertise and credentialed expertise on a par, particularly in their advice to peers. Third, and on that basis, parents use the forum for deliberating on future or past vaccination-related decisions. In doing so, they frequently draw on idiosyncratic notions of individual risks and benefits. These three practices enable parents to accumulate and share what we label navigational capital. We conclude that parents resort to online spaces both out of a subjective need and, for some, as a result of a dysfunction of the national childhood vaccination program which offers little orientation for parents. • Online forums are important for parents' vaccination trajectories in systems that offer little guidance or orientation. • Online forums facilitate sharing and accumulating navigational capital. • Parent use online forums to address questions that seem too conflictual in face to face encounters with health care providers. • Parents use online forums for sharing, collecting, and evaluating lay and credentialied expertise. • Peer to peer advice could be beneficial towards vaccine acceptance. [ABSTRACT FROM AUTHOR]

During the initial months of the Covid-19 pandemic, credentialed experts—scientists, doctors, public health experts, and policymakers—as well as members of the public and patients faced radical uncertainty. Knowledge about how Covid-19 was spread, how best to diagnose the disease, and how to treat infected patients was scant and contested. Despite this radical uncertainty, however, certain users of Covid-19 Together, a large online community for those who have contracted Covid-19, were able to dispense advice to one another that was seen as credible and trustworthy. Relying on Goffman's dramaturgical theory of social interaction, we highlight the performative dimension of claims to lay expertise to show how credibility is accrued under conditions of radical uncertainty. Drawing on four months of data from the forum, we show how credible performances of lay expertise necessitated the entangling of expert discourse with illness experience, creating a hybrid interlanguage. A credible performance of lay expertise in this setting was characterized by users' ability to switch freely between personal and scientific registers, finding and creating resonances between the two. To become a credible lay expert on this online community, users had to learn to ask questions and demonstrate a willingness to engage with biomedical knowledge while carefully generalizing their personal experience. [ABSTRACT FROM AUTHOR]

At the center of the COVID-19 pandemic lies a ubiquitous feature of medicine. Medicine is permeated with ignorance. Seizing this moment to assess the current state of medical sociology, this article articulates a sociology of medical ignorance. We join insights from earlier medical sociological scholarship on uncertainty with emerging research in the sociology of ignorance to help make sense of the omnipresent but sometimes invisible dynamics related to the unknowns in medicine. Then we examine two streams of inquiry with a focus on uncertainty and ignorance-(1) research on the interconnections between technology, medical authority, and ignorance and (2) research on lay expertise within the context of ever-present uncertainties. For decades, and to good effect, medical sociologists have asked, "What does medicine know, and what are the consequences of such knowing?" Going forward, we encourage medical sociologists to examine the unknown in medicine and the consequences of not knowing. [ABSTRACT FROM AUTHOR]

Storytelling has long been used as a theoretical framework for understanding how we share information and learn about health – and illness – online. But is it all about storytelling on social media platforms? To explore how and to what extent personal stories shape health content on these platforms, this article presents an analysis of tweets discussing the BRCA gene mutation – a hereditary cancer condition. Theoretically, the study advances a new conceptual framework to explore social media practices within issue-based and long-lived social media threads. Methodologically, it develops a platform-oriented discourse analytic approach. Findings show that non-narrative content is actually more common than storytelling in Twitter conversations about BRCA, with a number of patient advocates acting as gatekeepers of scientific information. Most BRCA storytelling is mediated and shared in third person, with those at the heart of these stories becoming exemplars within the BRCA 'subculture'. [ABSTRACT FROM AUTHOR]

As a new yet increasingly important phenomenon in science communication, lay experts' communicating science to patients is currently under-researched. Drawing on ethnographical study of an on-line support group in China and analyzing the interaction between a lay expert and patients, this article investigates the construction of lay expertise through the use of emotion discourse and evaluation language. Situating the analysis in wider historical and social context of science communication in China, I discuss the different roles of lay expertise in the West and China. It is observed that the application of emotional discursive strategies, though mainly serves to assert the moral justness of science authorities in this case study, may in the future facilitate informed discussions on cancer treatment, science and health. • Emotion discourse and evaluation language should not be taken as direct reflections of interactants' inner states. • Instead, as this study demonstrates, they constitute important resources in the lay expert's on-line communication with other cancer patients. • Drawing on these linguistic resources, the lay expert moralizes different positions regarding science and asserts the moral justness of science authorities and believers. • This lay expert's discursive practices and stances contrast starkly with its Western counterparts. • Some explanations are provided concerning this observed contrast with Western countries. [ABSTRACT FROM AUTHOR]

Framed both as a solution to and as an additional part of the tobacco problem, e-cigarettes have been the subject of risk controversies since they were launched in 2006, followed by massive divergence in media, public health approaches and regulations across the world. This study explores vapers' risk perceptions and accounts of the public risk communication and regulation of e-cigarettes in a Norwegian context were nicotine-containing e-liquids are prohibited from being sold by domestic retailers. Based on analyses of semi-structured qualitative interviews (n = 30, 17 males) with adult vapers, I find that the participants emphasised three important dimensions related to risk. First, they perceived vaping as harm reduction by substituting for smoking. Second, they devalued much of the risk communication about e-cigarettes from Norwegian health authorities and media. Interlinked with their harm-reduction approach, they perceived the present regulation of nicotine e-liquid and vaporisers as increasing risk by decreasing their availability to smokers. Third, in general they preferred the lay expertise available online to the health authorities' information on e-cigarettes. The analysis displays a lack of trust among the participants in what can be labelled as top-down information. Based on these dimensions, I conclude that the dissonance between vapers risk perceptions and the regulation and mixed messages in risk communication of e-cigarettes has contributed to their preference for bottom-up expertise. From the vapers' point of view, e-cigarettes represent harm reduction, and the vaper community symbolises a bottom-up health movement where peer assistance compensates for a perceived lack of assistance from health authorities. [ABSTRACT FROM AUTHOR]

Peer support workers are now working with patients in a variety of settings, coming into close contact and even work alongside health professionals. Despite the potentially influential position peer support workers hold in relation to those engaged in support activities, their role, duties and their relationship to peers and health professionals lack clarity and is often defined by other actors. This study explores how peer support workers interpret and define the activities, responsibilities and knowledge associated with their work. Using methods of membership categorisation analysis, we analysed interview materials generated by conducting individual semi-structured interviews during the autumn of 2016 with prostate cancer peer support workers (n = 11) who currently volunteer as support workers in Finland. Although the peer support workers acknowledged the psychosocial aspects of the work, we argue that their interpretations extend far beyond this and encompass expertise, advocacy and activism as central features of their work. These can be used to strengthen their position as credible commentators and educators on issues relating to cancer and men's health; raise awareness and represent the 'patient's voice' and attempt to influence both policy and clinical practice. These findings suggest that by categorising their work activities in different ways, voluntary sector actors such as peer support workers can attempt to portray themselves as legitimate authorities on a range of issues and influence decision-making ranging from individual level treatment decisions all the way to health policy. [ABSTRACT FROM AUTHOR]

Sociologists have documented how the pharmaceutical industry has corrupted pharmacovigilance (PV), defined as the practices devoted to detecting and preventing adverse drug reactions (ADRs). In this article, I juxtapose the official postmarketing system of PV with firsthand accounts of ADRs as found in 60 YouTube vlogs created by 29 individuals who recount debilitating reactions to fluoroquinolones, a common class of antibiotics. Whereas official PV is said to contribute the banalization of risk, these vlogs exemplify the dramatization of risk. I consider the vlogs as instances of lay PV. They represent lay knowledge claims created in response to perceived failures in the official system of regulation. As such, lay PV shares commonalties with other articulations of lay expertise as a counter to medical authority. At the same time, this case also underscores how the YouTube platform offers new tools for the creation and distribution of lay expertise. [ABSTRACT FROM AUTHOR]

White nationalists have a genetic essentialist understanding of racial identity, so what happens when using genetic ancestry tests (GATs) to explore personal identities, they receive upsetting results they consider evidence of non-white or non-European ancestry? Our answer draws on qualitative analysis of posts on the white nationalist website Stormfront, interpreted by synthesizing the literatures on white nationalism and GATs and identity. We show that Stormfront posters exert much more energy repairing individuals' bad news than using it to exclude or attack them. Their repair strategies combine anti-scientific, counter-knowledge attacks on the legitimacy of GATs and quasi-scientific reinterpretations of GATs in terms of white nationalist histories. However, beyond individual identity repair they also reinterpret the racial boundaries and hierarchies of white nationalism in terms of the relationships GATs make visible. White nationalism is not simply an identity community or political movement but should be understood as bricoleurs with genetic knowledge displaying aspects of citizen science. [ABSTRACT FROM AUTHOR]

Anna Leuschner argues that there is problematic circularity in Helen Longino's approach that postulates the existence of some shared norms as a necessary precondition for well-functioning pluralistic communities. As an alternative, Leuschner proposes to approach the establishing of more pluralistic communities through political means on a case-by-case basis, taking relevant epistemic and political factors into account. In this paper, I argue that there is an alternative understanding of norms that avoids circularity. I do so by drawing on Isabelle Peschard's discussion of shared practice. I go on to show that norms, so understood, are important in the cases where a political decision may not alone be sufficient for establishing a successful community. Specifically, I discuss pluralistic communities that include laypersons in possession of relevant expertise as an example. • The paper responds to Leuschner's criticism of circularity in Longino's account. • Thinking about norms in terms of shared normative practice avoids circularity. • Cultivating shared norms is crucial for communities that include laypersons. • A successful collaboration in climate science provides an example of shared practice. [ABSTRACT FROM AUTHOR]

Although randomized controlled trials (RCTs) examine "objective" indicators of safety and efficacy of investigational drugs, participants may not perceive study medications as neutral entities. Some medications are imbued with social and cultural meaning, such as stigmatized medications for opioid use disorders. Such perceptions surrounding substance use treatments can extend to the research context and shape RCT participants' experiences with and adherence to study medications. Considering these complexities in substance use research, we conducted a nested qualitative study within a multi-site, pragmatic RCT in Canada testing two treatments (methadone versus buprenorphine/naloxone) for opioid use disorder. Between 2017 and 2020, we conducted 115 interviews with 75 RCT participants across five trial sites in British Columbia, Alberta, Ontario, and Quebec. Using an abductive coding approach, we characterized participants by their previous experience with medication for opioid use disorder and by their exposure to drug culture and drug scenes. Across these experience types, we identified systematic differences around participants' perceptions of the study medications, sources of information and expertise, and medication stigma. Our findings illustrate the critical importance of social context in shaping medication beliefs and study experiences among people who use drugs, with implications for the conduct of future RCTs in substance use. • Medications for opioid use disorder have social meaning that can influence research. • Participants' prior experiences shape medication beliefs and RCT participation. • Nested qualitative studies within RCTs provide robust data on research experiences. [ABSTRACT FROM AUTHOR]

Background: The impact of chronic diseases in our society is growing. The idea of self‐care generates understandable enthusiasm and is seen as a natural answer. It is important to develop an understanding of self‐care practices that goes beyond a clinical understanding of the disease and that acknowledges everyday practicalities, and the perspective of the patient. Objective: To shed light on some of the practicalities of everyday chronic self‐care, to expose to analysis the key role of lay expertise and to stress the importance of its recognition in future chronic care practices and technology. Design: Ethnomethodological investigations based on observations of a patient support group (10 months) and some shadowing sessions of everyday practices, semi‐structured interviews with individuals with type 1 diabetes (n = 14) and professional caregivers (n = 7). Analysis: The qualitative data analysis was inspired by grounded theory and aimed at ordering data under emerging categories and topics. Results: The patient's knowledge and expertise is critical to grounding, integrating and complementing technical‐medical/clinical knowledge in everyday chronic self‐care. To deal with the intricacies and difficulties of everyday chronic self‐care, individuals with type 1 diabetes develop different ways of knowing and dealing with the disease that need to be equally taken into account in the reorganization of care delivery, and in the design of the tools to support it. Conclusion: Rethinking the traditional separation between hard and soft data may be a possible first step towards rethinking the role of lay expertise in chronic care towards better supports for self‐care practices and patient empowerment. [ABSTRACT FROM AUTHOR]

Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives (patient knowledge) and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either as essentially different from or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices (how patients know) and the collection and making accessible of techniques (what patients know). [ABSTRACT FROM PUBLISHER]

Patient advocacy organizations (PAOs) are nonprofit groups that represent patients and families affected by a significant medical condition or disease. We review some of the different approaches that humanities and social researchers use to study PAOs. Drawing on this recent scholarship, we describe some contemporary patient groups and explore how PAOs can collaborate with biomedical researchers to advance genomic science. We highlight research that aims to describe how PAOs are contributing to multiple aspects of biomedical research, including study design, definition of research goals, data collection and analysis, dissemination of results, and research funding. We also describe several challenges that genomic researchers may encounter in collaborations with PAOs. Throughout our review, we focus on the manner in which new PAO roles challenge traditional boundaries between researchers and subjects, thereby redefining the relationship of patients to science. We consider how this shift may affect our view of scientific collaborations and impact genomic researchers in the future. [ABSTRACT FROM AUTHOR]

Abstract: This paper reports on a study of the ways in which 54 older people in South Wales (UK) talk about the symptoms and causes of cold and influenza (flu). The study was designed to understand why older people might reject or accept the offer of seasonal flu vaccine, and in the course of the interviews respondents were also asked to express their views about the nature and causes of the two key illnesses. The latter are among the most common infections in human beings. In terms of the biomedical paradigm the common cold is caused by numerous respiratory viruses, whilst flu is caused by the influenza virus. Medical diagnosis is usually made on clinical grounds without laboratory confirmation. Symptoms of flu include sudden onset of fever and cough, and colds are characterized by sneezing, sore throat, and runny nose, but in practice the symptoms often overlap. In this study we examine the degree by which the views of lay people with respect to both diagnosis and epidemiology diverge with that which is evident in biomedical discourse. Our results indicate that whilst most of the identified symptoms are common to lay and professional people, the former integrate symptoms into a markedly different observational frame from the latter. And as far as causation is concerned it is clear that lay people emphasize the role of ‘resistance’ and ‘immunity’ at least as much as ‘infection’ in accounting for the onset of colds and flu. The data are analyzed using novel methods that focus on the co-occurrence of concepts and are displayed as semantic networks. As well as reporting on its findings the authors draw out some implications of the study for social scientific and policy discussions concerning lay diagnosis, lay expertise and the concept of an expert patient. [Copyright &y& Elsevier]

Abstract: This paper examines the reactions of women with breast cancer to the 2009 U.S. Preventive Services Task Force recommendations for mammography screening. Specifically, it analyzes electronic postings about the Task Force’s recommendations from five breast cancer discussion boards between November 17, 2009 and December 17, 2009. Women’s opposition to the recommendations is best understood as a clash between scientific and lay expertise concerning the priorities of medicine and notions of evidentiary significance. We highlight the connective logic – or connectivity – that underlies lay expertise in the electronic era. Connectivity is a unique way of knowing that emerges from an experiential connection to illness and a virtual connection to others with the same illness. Connectivity is based on forms of evidence that enhance the moral authority of lay claims for medical succor. Connectivity is a potent element in contemporary lay challenges to scientific expertise and will become increasingly influential as online illness affiliation becomes ever more commonplace. [Copyright &y& Elsevier]

The 'collectif interassociatif autour de la naissance, Ciane' brings together organisations with various backgrounds, resources and competencies; thanks to Internet coordination tools, it succeeded in articulating an expertise gained from experience of women and couples with a medico-scientific expertise. Thus, it took advantage of the diversity of its members to constitute a movement oriented towards policy action at large. [ABSTRACT FROM AUTHOR]

Lay participation in the deliberation of techno-scientific issues has become an important objective of policy making in many countries. Using the example of a series of Round Table discussions dealing with genome research allows us to analyse the ways in which the participants of this event construct their arguments during the discussion. Explaining the observed discursive strategies we focus on performative aspects of the deliberation process. In such a way it is taken into account how the setting of a given participatory process influences the ways in which participants are enrolled and enact their participation accordingly. In the analysed case, the setting was not taken as a given, but public participation and its discursive framework became itself subject to negotiation during the process. Hence, the discursive power of individual experiences and the legitimacy of personal interests as the argumentative basis were negotiated during the Round Table discussions. The participants only rarely grounded their statements in practical knowledge and individual experiences. Instead we saw them performing other discursive repertoires, e.g. drawing on societal benefits. Individual perspectives were often transcended and articulated in the form of super-individual arguments which endowed participants' statements with substantial discursive power and provided an alternative rationale for contributing to the deliberation without explicit reference to personal experiences. More broadly, the observed reluctance of the participants to speak-up for their personal interests can be seen as a result of a political culture that favours the advancement of de-individualised perspectives in public deliberation. [ABSTRACT FROM AUTHOR]

Abstract: The study design sought to elicit, through the prism of music, participants’ life stories and stories of being well and being ill. A qualitative research stance was used, consisting of a pragmatic synthesis of elements of action research, ethnography and grounded theory. Twenty-two (n =22) participants from Oslo and Akershus in Norway, aged between 34 and 65 and with long-term illnesses and diseases, were recruited as a strategic sample. Data collection involved eight in-depth interviews with each participant stretching over a year from 2004 to 2005. A novel ‘Participatory CD Design’ was developed and four double CD compilations from different genres were used as devices to increase knowledge as to whether participants through exposure to and exchange of new musical materials and practices, might learn to use music as a ‘technology’ of self towards health, healing and recovery. The participants met at the end of a yearlong process through a social musical event. [ABSTRACT FROM AUTHOR]

Anticipating or responding to European public concerns over agbiotech, state bodies have sponsored participatory exercises in technology assessment (TA). Some participants have sought to open up technological decisions vis-à-vis alternative futures and normative choices, but such efforts have been marginalized; the trajectory of biotechnological innovation has been protected from challenge. Questions about agbiotech as control have been displaced and channeled into regulatory issues and control measures. To some extent, participatory TA exercises have helped to hold governments accountable for regulatory criteria, but not for innovation choices. These participatory TA exercises generally internalize assumptions about agbiotech as societal progress. Despite aspirations to democratize technological choices, the exercises tend to biotechnologise democracy. The prospects for democratization depend upon wider, autonomous forms of participation – neither sponsored nor welcomed by state bodies. [ABSTRACT FROM AUTHOR]

Public involvement in healthcare is a prominent policy in countries across the economically developed world. A growing body of academic literature has focused on public participation, often presenting dichotomies between good and bad practice: between initiatives that offer empowerment and those constrained by consumerism, or between those which rely for recruitment on self-selecting members of the public, and those including a more broad-based, statistically representative group. In this paper I discuss the apparent tensions between differing rationales for participation, relating recent discussions about the nature of representation in public involvement to parallel writings about the contribution of laypeople's expertise and experience. In the academic literature, there is, I suggest, a thin line between democratic justifications for involvement, suggesting a representative role for involved publics, and technocratic ideas about the potential ‘expert’ contributions of particular subgroups of the public. Analysing recent policy documents on participation in healthcare in England, I seek moreover to show how contemporary policy transcends both categories, demanding complex roles of involved publics which invoke various qualities seen as important in governing the interface between state and society. I relate this to social-theoretical perspectives on the relationship between governmental authority and citizens in late-modern society. [ABSTRACT FROM AUTHOR]

As health care applications derived from human genetics research are likely to move increasingly from ‘clinic to community’, there is growing interest not just in how patients understand and take up health-related genetic information but also in the views of the wider population, as well as a range of professional groups. In this paper, issues relating public knowledge and public trust are raised and discussed in an attempt to move forward debates about public involvement in genomic research and the role of sociologists within interdisciplinary teams. As the field of public understanding of science has developed, we have seen a shift from a focus on the lack of scientific literacy as problem to a recognition of the range of different knowledges that people have and use as they confront science and technology in their everyday lives. As a mood for dialogue pervades many institutions in their relations with ‘publics’, attention must now be paid to the way in which knowledge and expertise is expressed, heard and acted upon in dialogic encounters. There is increasing concern about public trust in science and calls to increase public confidence, particularly through more open engagement with a range of publics. However, lack of trust or loss of confidence may be constructed as problems rather than reflecting empirical reality, where more complex relationships and attitudes prevail. Lack of trust is often privatized, deeply rooted in lived experience and routinely managed. Trust relations are generally characterized by ambivalence, uncertainty and risk, and are always provisional. Drawing on selected literature and empirical research to review and illustrate this field, this paper argues that scepticism or ambivalence on the part of publics are not necessarily problems to be overcome in the interest of scientific progress, but rather should be mobilized to enhance open and public debates about the nature and direction of genomics research, medicine, and the related social and ethical issues. Just as there can be no resolute expression of public knowledge or public opinion, it is unlikely that there is a resolute expression of public trust in genomics. However, ambivalence and scepticism can be harnessed as powerful resource for change, whether through the mobilization of public knowledges or the development of greater reflexivity within scientific institutions. This demands a sharing of power and greater public involvement in the early stages of policy formation and scientific and medical agenda setting. Copyright © 2006 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Abstract: In recent years, there have been growing expectations about the future benefits deriving from the uptake of genetics knowledge in healthcare. At the same time, there have been increasing calls to make greater use of patient expertise in treatment. However, relatively little is known about the experiences, needs and expertise of those who currently have a genetic condition. Drawing on the findings from an Australian study involving 21 semi-structured interviews with members of support groups which represent those with various genetic conditions (cystic fibrosis, haemochromatosis, haemophilia, and thalassaemia) this article discusses how individuals learn about, live with and manage their condition, and assesses the extent to which their experiences differ from those with other chronic illness conditions. It argues that while the experiences of individuals who have a genetic condition would appear to be similar in many respects to those with other chronic illnesses, they tend to encounter particular challenges in managing their condition due to its inheritable nature. [Copyright &y& Elsevier]

The paper has three main aims. First, to trace – through the pages of Sociology of Health and Illness – the changing ways in which lay understandings of health and illness have been represented during the 1979–2002 period. Second, to say something about the limits of lay knowledge (and particularly lay expertise) in matters of health and medicine. Third, to call for a re–assessment of what lay people can offer to a democratised and customer–sensitive system of health care and to attempt to draw a boundary around the domain of expertise. In following through on those aims, the author calls upon data derived from three current projects. These latter concern the diagnosis of Alzheimer’s disease in people with Down’s syndrome; the development of an outcome measure for people who have suffered a traumatic brain injury; and a study of why older people might reject annual influenza vaccinations. [ABSTRACT FROM AUTHOR]

Cancer as a chronic illness? Reconsidering categorization and exploring experience This article explores the different ways that user experience is defined and conceptualized, and the various policy and professional contexts in which emphasis is placed on exploring users’ views. We go on to examine the experience of cancer as a chronic illness and argue that, although there are common features in the experience of cancer and people with chronic illness, the differences are too significant and cancer should not be defined as a chronic condition. We conclude with a consideration of the methodological difficulties of documenting user experience and identify the need for further methodological development. [ABSTRACT FROM AUTHOR]

Recent literature on the public understanding of science has focused on replacing the deficit model of public communication in which experts disseminate information with one that encourages public participation and dialogue. Situated within this call for increased participation, this study looks at self-care practices in which medical expertise is not passively consumed by the layperson, but shared and (re)produced through arenas of lay practice. This collective knowledge production is facilitated by the online environment, which provides access to mediated medical knowledge and the ability to form communities in which users can negotiate this expertise and share their experiences. The laypersons examined here are members of the Canadian online collective, Running Mania , highlighting how this negotiation of expertise occurs in a "wellness" community. Drawing from member interviews and website observations of the site's injury forum, the study examines collective injury management using two dominant theoretical discourses surrounding lay knowledge and participation in medical expertise: the lay expert whose knowledge arises from experience and the expert patient whose knowledge base parallels dominant biomedical discourse. Using the coproduction model and the related concepts of tinkering and logic of care from material semiotics, the research examines how these knowledge forms articulate to produce an intermediary discourse unique to this collective's articulation of running and caring practices, a discourse that is enacted in individuals' embodied negotiation of these multiple forms of medical expertise. It suggests that the logic of care has the potential to bridge the expert/lay boundary since the need for persistent, attentive tinkering applies across epistemological divides: in "good" care practices, multiple expertises are needed, both expert and lay, to hold the body together. • Online self-care collectives are sites of participation with medical expertise. • Multiple mediated medical expertises and lay expertise coproduce new knowledge. • Laypersons negotiate collective knowledge in the context of their own embodiment. • "Good" care requires attentive, persistent tinkering with multiple expertises. • Commitment to "good" care is a shared value that blurs the expert/lay boundary. [ABSTRACT FROM AUTHOR]

When seeking advice online about health concerns, forums dedicated to medical themes are increasingly becoming an appreciated source of information for many individuals. In online health communities, patients can ask questions or otherwise seek advice that is particularly relevant to them. While they may find some of the advice useful, other advice may be perceived as less valuable. By studying the advice-seeking, advice-giving, and advice-evaluation behaviours in one of the largest online health communities in Europe, this paper looks at what determines which advice is perceived as helpful, and why. Drawing on network theory, we analysed the interaction data of 108,569 users over twelve consecutive years based on all publicly available information of an established Q&A online health community. Utilising zero-inflated negative binominal modelling, our results show that advice received from others, who have similar predominant interests, is valued more when reaching out for lay expertise. If this advice is given by peers, who can also draw on expertise from other health areas, allowing for a combination of diverse "lay" expertise, the advice is valued even more. Advice provided by those who are quick to obtain the latest knowledge available in the larger community further reinforces these effects. Our findings offer an original view to understand the influence of lay expertise exchanged via online health communities and hold implications for both policy-makers and medical practitioners regarding their approach to patient-initiated use of social media for health-related reasons. • People readily seek health advice online. • People value advice from others who have similar predominant health interests. • People value advice from knowledgeable others. • People value speed of access to their peers' expertise. [ABSTRACT FROM AUTHOR]

Researchers across academia, government, and private industry increasingly value patient-led research for its ability to produce quick results from large samples of the population. This study examines the role played by self-experimentation in the production of health data collected in these projects. We ask: How does the collaborative context of online health communities, with their ability to facilitate far-reaching collaborations over time and space, transform the practice and epistemological foundations of engaging in n = 1 experimentation? We draw from a digital ethnography of an online patient-led research movement, in which participants engage in self-experiments to develop a protocol for using psilocybe-containing mushrooms as a treatment for cluster headache, an excruciating neurological disease for which there is little medical research and huge unmet treatment need. We find that the collectivizing features of the internet have collectivized self-experimentation. Group dynamics shape everything in "collective self-experimentation," from individual choices of intervention, reporting of outcomes, data analysis, determinations of efficacy, to embodiment. This study raises important questions about the role that individuals play in the creation of medical knowledge and the data that informs crowdsourced research. • Research on patient-led research and crowdsourcing should analyze social interaction. • Self-experimentation becomes collective in groups that promote collective embodiment. • Collective self-experimentation enables development of novel, pragmatic treatments. [ABSTRACT FROM AUTHOR]