Epistemic and institutional recognition work in changing conditions of social visibility: Anosmia's journey from the shadows to the spotlight.

This paper explores the complex relationships between recognition, collective action, and social (in)visibility of health conditions. We trace how collective action for recognition changes as conditions of visibility shift. We investigate how the Covid-19 global pandemic thrust one health condition (anosmia) and collective efforts around its recognition from almost complete public invisibility into a sudden spotlight. We show how 'prepared' movement actors leveraged this sudden hypervisibility to mobilize resources and change cultural values, noting how prior 'recognition work' becomes a resource for new ways to advocate for their condition's recognition, toward epistemic and institutional recognition: from building a shared epistemic ground and improving relatability, toward resource distribution and finally, creating and institutionalizing new cultural values through policy change. Our findings highlight organizational efforts to mitigate community tensions and dispersions related to hypervisibility, through boundary and integration work.

Genetic research and the collective good: participants as leaders to reconcile individual and public interests.

This paper problematises the notions of public or common good as weighed against individual sovereignty in the context of medical research by focusing on genetic research. We propose the notion of collective good as the good of the particular collective in which the research was conducted. We conducted documentary and interview-based research with participant representatives and research leaders concerned with participant involvement in leading genetic research projects and around two recent genetic data controversies: the case of the UK Wellcome Sanger Institute, accused of planning unauthorised commercialisation of African DNA samples, and the case of the company Genuity Science, which planned genetic research on brain tumour samples in Ireland with no explicit patient consent. We advocate for greater specificity in circumscribing the collective to which genetic research relates and for greater efforts in including representatives of this collective as research coleaders in order to enable a more inclusive framing of the good arising from such research. Such community-based participant cogovernance and coleadership in genetic research is vital especially when minorities or vulnerable groups are involved, and it centrally requires community capacity building to help collectives articulate their own notions of the collective good.

Solidarity during the COVID-19 pandemic: evidence from a nine-country interview study in Europe.

Calls for solidarity have been an ubiquitous feature in the response to the COVID-19 pandemic. However, we know little about how people have thought of and practised solidarity in their everyday lives since the beginning of the pandemic. What role does solidarity play in people's lives, how does it relate to COVID-19 public health measures and how has it changed in different phases of the pandemic? Situated within the medical humanities at the intersection of philosophy, bioethics, social sciences and policy studies, this article explores how the practice-based understanding of solidarity formulated by Prainsack and Buyx helps shed light on these questions. Drawing on 643 qualitative interviews carried out in two phases (April-May 2020 and October 2020) in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, The Netherlands, German-speaking Switzerland and the UK), the data show that interpersonal acts of solidarity are important, but that they are not sustainable without consistent support at the institutional level. As the pandemic progressed, respondents expressed a longing for more institutionalised forms of solidarity. We argue that the medical humanities have much to gain from directing their attention to individual health issues, and to collective experiences of health or illness. The analysis of experiences through a collective lens such as solidarity offers unique insights to understandings of the individual and the collective. We propose three essential advances for research in the medical humanities that can help uncover collective experiences of disease and health crises: (1) an empirical and practice-oriented approach alongside more normative approaches; (2) the confidence to make recommendations for practice and policymaking and (3) the pursuit of cross-national and multidisciplinary research collaborations.

Analysis of the institutional landscape and proliferation of proposals for global vaccine equity for COVID-19: too many cooks or too many recipes?

This article outlines and compares current and proposed global institutional mechanisms to increase equitable access to COVID-19 vaccines, focusing on their institutional and operational complementarities and overlaps. It specifically considers the World Health Organization's (WHO's) COVAX (COVID-19 Vaccines Global Access) model as part of the Access to COVID-19 Tools Accelerator (ACT-A) initiative, the WHO's COVID-19 Technology Access Pool (C-TAP) initiative, the proposed TRIPS (Trade-Related Aspects of Intellectual Property Agreement) intellectual property waiver and other proposed WHO and World Trade Organization technology transfer proposals. We argue that while various individual mechanisms each have their specific individual merits-and in some cases weaknesses-overall, many of these current and proposed mechanisms could be highly complementary if used together to deliver equitable global access to vaccines. Nonetheless, we also argue that there are risks posed by the proliferation of proposals in this context, including the potential to disperse stakeholder attention or to delay decisive action. Therefore, we argue that there is now a clear need for concerted global multilateral action to recognise the complementarities of specific models and to provide a pathway for collaboration in attaining global equitable access to vaccines. The institutional infrastructure or proposals to achieve this amply exist at this point in time-but much greater cooperation from industry and clear, decisive and coordinated action from states and international organisations are urgently needed.

Democratic research: Setting up a research commons for a qualitative, comparative, longitudinal interview study during the COVID-19 pandemic.

The sudden and dramatic advent of the COVID-19 pandemic led to urgent demands for timely, relevant, yet rigorous research. This paper discusses the origin, design, and execution of the SolPan research commons, a large-scale, international, comparative, qualitative research project that sought to respond to the need for knowledge among researchers and policymakers in times of crisis. The form of organization as a research commons is characterized by an underlying solidaristic attitude of its members and its intrinsic organizational features in which research data and knowledge in the study is shared and jointly owned. As such, the project is peer-governed, rooted in (idealist) social values of academia, and aims at providing tools and benefits for its members. In this paper, we discuss challenges and solutions for qualitative studies that seek to operate as research commons.

Anticipating hopes, fears and expectations towards COVID-19 vaccines: A qualitative interview study in seven European countries.

Vaccine uptake is essential to managing the ongoing COVID-19 pandemic, and vaccine hesitancy is a persistent concern. At the same time, both decision-makers and the general population have high hopes for COVID-19 vaccination. Drawing from qualitative interview data collected in October 2020 as part of the pan-European SolPan study, this study explores early and anticipatory expectations, hopes and fears regarding COVID-19 vaccination across seven European countries. We find that stances towards COVID-19 vaccines were shaped by personal lived experiences, but participants also aligned personal and communal interests in their considerations. Trust, particularly in expert institutions, was an important prerequisite for vaccine acceptance, but participants also expressed doubts about the rapid vaccine development process. Our findings emphasise the need to move beyond the study of factors driving vaccine hesitancy, and instead to focus on how people personally perceive vaccination in their particular social and political context.

Implementing a National Electronic Referral Program: Qualitative Study.

BACKGROUND: Electronic referrals or e-referrals can be defined as the electronic transmission of patient data and clinical requests between health service providers. National electronic referral systems have proved challenging to implement due to problems of fit between the technical systems proposed and the existing sociotechnical systems. In seeming contradiction to a sociotechnical approach, the Irish Health Service Executive initiated an incremental implementation of a National Electronic Referral Programme (NERP), with step 1 including only the technical capability for general practitioners to submit electronic referral requests to hospital outpatient departments. The technology component of the program was specified, but any changes required to embed that technology in the existing sociotechnical system were not specified. OBJECTIVE: This study aimed to theoretically frame the lessons learned from the NERP step 1 on the design and implementation of a national health information technology program. METHODS: A case study design was employed, using qualitative interviews with key stakeholders of the NERP step 1 (N=41). A theory-driven thematic analysis of the interview data was conducted, using Barker et al's Framework for Going to Full Scale. RESULTS: The NERP step 1 was broadly welcomed by key stakeholders as the first step in the implementation of electronic referrals-delivering improvements in the speed, completeness of demographic information, and legibility and traceability of referral requests. National leadership and digitalized health records in general practice were critical enabling factors. Inhibiting factors included policy uncertainty about the future organizational structures within which electronic referrals would be implemented; the need to establish a central referral office consistent with these organizational structures; outstanding interoperability issues between the electronic referral solution and hospital patient administration systems; and an anticipated need to develop specialist referral templates for some specialties. A lack of specification of the sociotechnical elements of the NERP step 1 inhibited the necessary testing and refinement of the change package used to implement the program. CONCLUSIONS: The key strengths of the NERP step 1 are patient safety benefits. The NERP was progressed beyond the pilot stage despite limited resources and outstanding interoperability issues. In addition, a new electronic health unit in Ireland (eHealth Ireland) gained credibility in delivering national health information technology programs. Limitations of the program are its poor integration in the wider policy and quality improvement agenda of the Health Service Executive. The lack of specification of the sociotechnical elements of the program created challenges in communicating the program scope to key stakeholders and restricted the ability of program managers and implementers to test and refine the change package. This study concludes that while the sociotechnical elements of a national health information technology program do not need to be specified in tandem with technical elements, they do need to be specified early in the implementation process so that the change package used to implement the program can be tested and refined.