Introduction: priority setting, equitable access and public involvement in health care

Purpose – The purpose of this paper is to introduce the special issue on improving equitable access to health care through increased public and patient involvement (PPI) in prioritization decisions by discussing the conceptualization, scope and rationales of PPI in priority setting that inform the special issue. Design/methodology/approach – The paper employs a mixed-methods approach in that it provides a literature review and a conceptual discussion of the common themes emerging in the field of PPI and health priority setting. Findings – The special issue focuses on public participation that is collective in character, in the sense that the participation relates to a social, not personal, decision and is relevant to whole groups of people and not single individuals. It is aimed at influencing a decision on public policy or legal rules. The rationales for public participation can be found in democratic theory, especially as they relate to the social and political values of legitimacy and representation. Originality/value – The paper builds on previous definitions of public participation by underlining its collective character. In doing so, it develops the work by Parry, Moyser and Day by arguing that, in light of the empirical evidence presented in this issue, public participatory activities such as protests and demonstrations should no longer be labelled unconventional, but should instead be labelled as “contestatory participation”. This is to better reflect a situation in which these modes of participation have become more conventional in many parts of the world

COVID-19 and techno-solutionism: responsibilization without contextualization?

Since the onset of the pandemic, and underpinned by often promissory undertones in policy discourse, an array of technological solutions have come to be regarded as privileged modes of intervention to curb the spread of COVID-19. Yet all too often the policies around COVID technologies have suffered from a spectrum of shortcomings or ‘fallacies’ (Jasanoff et al., 2021), which, notwithstanding the distinctiveness of each country’s policies, have characterized the pandemic response of most (liberal) democracies globally. In particular, the rollout of COVID interventions in many countries has tended to replicate a mode of intervention based on ‘technological fixes’ and ‘silver-bullet solutions’, which tend to erase contextual factors and marginalize other rationales, values, and social functions that do not explicitly support technology-based innovation efforts (Jasanoff et al., 2021). As Hill et al. (2022) in this Special Section argue, driving public health policy through such techno-solutionism only risks exacerbating existing social inequalities and mistrust in governments.Fondazione Caripl

Public Involvement in Health Priority Setting: Future Challenges for Policy, Research and Society

AbstractPurposeThe article reflects on the findings of this special issue and discusses the futurechallenges for policy, research and society. The findings suggest that challengesemerge as a result of legitimacy deficits of both consensus and contestatory modes of public involvement in health priority setting.Design/Methodology/ApproachThe article draws on the discussions and findings presented in this special issue. It seeks to bring the country experiences and case studies together to draw conclusions for policy, research and society.FindingsAt least two recurring themes emerge. An underlying theme is the importance, but also the challenge, of establishing legitimacy in health priority setting. The country experiences suggest that we understand very little about the conditions under which representative, or authentic, participation generates legitimacy and under which it will be regarded as insufficient. A second observation is that public participation takes a variety of forms that depend on the opportunity structures in a given national context. Given this variety the conceptualization of public participation needs to be expanded to account for the many forms of public participation.Originality/ValueThe article concludes that the challenges of public involvement are closely linked to the question of how legitimate processes and decisions can be generated in priority setting. This suggests that future research must focus more narrowly on conditions under which legitimacy are generated in order to expand our understanding of public involvement in health prioritization.KeywordsPublic participation, priority setting, legitimacy, authentic representation, equitable health coverageArticle ClassificationGeneral Revie

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.European Commission Horizon 2020Wellcome Trust -- Submitted for publication after 1 Jan 2021: 0m embargo and CC-BY licenseBundesministerium für Bildung und ForschungCOVID-19 Research Response Fund University of OxfordWellcome CenterKULeuven BOF FundUniversity of ViennaCariplo Foundation Social ScienceUniversity of Basel Research Fun

Public participation in decision-making on the coverage of new antivirals for hepatitis C.

Purpose - New hepatitis C medicines such as sofosbuvir underline the need to balance considerations of innovation, clinical evidence, budget impact and equity in health priority-setting. The purpose of this paper is to examine the role of public participation in addressing these considerations. Design/methodology/approach - The paper employs a comparative case study approach. It explores the experience of four countries - Brazil, England, South Korea and the USA - in making coverage decisions about the antiviral sofosbuvir and involving the public and patients in these decision-making processes. Findings - Issues emerging from public participation ac tivities include the role of the universal right to health in Brazil, the balance between innovation and budget impact in England, the effect of unethical medical practices on public perception in South Korea and the legitimacy of priority-setting processes in the USA. Providing policymakers are receptive to these issues, public participation activities may be re-conceptualized as processes that illuminate policy problems relevant to a particular context, thereby promoting an agenda-setting role for the public. Originality/value - The paper offers an empirical analysis of public involvement in the case of sofosbuvir, where the relevant considerations that bear on priority-setting decisions have been particularly stark. The perspectives that emerge suggest that public participation contributes to raising attention to issues that need to be addressed by policymakers. Public participation activities can thus contribute to setting policy agendas, even if that is not their explicit purpose. However, the actualization of this contribution is contingent on the receptiveness of policymakers.This is the author accepted manuscript. It is currently under an indefinite embargo pending publication by Emerald

Normative positions towards COVID-19 contact-tracing apps: findings from a large-scale qualitative study in nine European countries

Mobile applications for digital contact tracing have been developed and introduced around the world in response to the COVID-19 pandemic. Proposed as a tool to support ‘traditional’ forms of contact-tracing carried out to monitor contagion, these apps have triggered an intense debate with respect to their legal and ethical permissibility, social desirability and general feasibility. Based on a large-scale study including qualitative data from 349 interviews conducted in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, the Netherlands, German-speaking Switzerland, the United Kingdom), this paper shows that the binary framing often found in surveys and polls, which contrasts privacy concerns with the usefulness of these interventions for public health, does not capture the depth, breadth, and nuances of people’s positions towards COVID-19 contact-tracing apps. The paper provides a detailed account of how people arrive at certain normative positions by analysing the argumentative patterns, tropes and (moral) repertoires underpinning people’s perspectives on digital contact-tracing. Specifically, we identified a spectrum comprising five normative positions towards the use of COVID-19 contact-tracing apps: opposition, scepticism of feasibility, pondered deliberation, resignation, and support. We describe these stances and analyse the diversity of assumptions and values that underlie the normative orientations of our interviewees. We conclude by arguing that policy attempts to develop and implement these and other digital responses to the pandemic should move beyond the reiteration of binary framings, and instead cater to the variety of values, concerns and expectations that citizens voice in discussions about these types of public health interventions

Normative positions towards COVID-19 contact-tracing apps: findings from a large-scale qualitative study in nine European countries

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