How reforms hamper priority-setting in health care: an interview study with local decision-makers in London.

The fair allocation of scarce resources for health remains a salient topic in health care systems. Approaches for setting priorities in an equitable manner include technical ones based on health economic analyses, and ethical ones based on procedural justice. Knowledge on real-world factors that influence prioritisation at a local level, however, remains sparse. This article contributes to the empirical literature on priority-setting at the meso level by exploring how health care planners make decisions on which services to fund and to prioritise, and to what extent they consider principles of fair priority-setting. It presents the findings of an interview study with commissioners and stakeholders in South London between 2017 and 2018. Interviewees considered principles of fair prioritisation such as transparency and accountability important for offering guidance. However, the data show that in practice the adherence to principles is hampered by the difficulty of conceptualising and operationalising principles on the one hand, and the political realities in relation to reform processes on the other. To address this challenge, we apply insights from the policy and political sciences and propose a set of considerations by which current frameworks of priority-setting might be adapted to better incorporate issues of context and politics.

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.

The complexities of integrating evidence-based preventative health into England's NHS: lessons learnt from the case of PrEP.

BACKGROUND: The integration of preventative health services into England's National Health Service is one of the cornerstones of current health policy. This integration is primarily envisaged through the removal of legislation that blocks collaborations between NHS organisations, local government, and community groups. AIMS AND OBJECTIVES: This paper aims to illustrate why these actions are insufficient through the case study of the PrEP judicial review. METHODS: Through an interview study with 15 HIV experts (commissioners, activists, clinicians, and national health body representatives), we explore the means by which the HIV prevention agenda was actively blocked, when NHS England denied responsibility for funding the clinically effective HIV pre-exposure prophylaxis (PrEP) drug in 2016, a case that led to judicial review. We draw on Wu et al.'s (Policy Soc 34:165-171, 2016) conceptual framing of 'policy capacity' in undertaking this analysis. RESULTS: The analyses highlight three main barriers to collaborating around evidence-based preventative health which indicate three main competence/capability issues in regard to policy capacity: latent stigma of 'lifestyle conditions' (individual-analytical capacity); the invisibility of prevention in the fragmented health and social care landscape related to issues of evidence generation and sharing, and public mobilisation (organizational-operational capacity); and institutional politics and distrust (systemic-political capacity). DISCUSSION AND CONCLUSION: We suggest that the findings hold implications for other 'lifestyle' conditions that are tackled through interventions funded by multiple healthcare bodies. We extend the discussion beyond the 'policy capacity and capabilities' approach to connect with a wider range of insights from the policy sciences, aimed at considering the range of actions needed for limiting the potential of commissioners to 'pass the buck' in regard to evidence-based preventative health.

Citizenship in times of crisis: biosocial state-citizen relations during COVID-19 in Austria.

Drawing upon 152 in-depth qualitative interviews with residents in Austria carried out in the first year of the pandemic, this article discusses how people's experiences with COVID-19 policies reflect and reshape state-citizen relations. Coinciding with a significant government crisis, the first year of COVID-19 in Austria saw pandemic measures justified with reference to a biological, often medical understanding of health that framed disease prevention in terms of transmission reduction, often with reference to metrics such as hospitalisation rates, etc. Instead of using this biomedical frame, our interviewees, however, drew attention to biopsychosocial dimensions of the crisis and problematised the entanglements between economy and health. We call this the emergence of a biosocial notion of citizenship that is attentive to psychological, social and economic dimensions of health. Insights into the biosocial nature of pandemic citizenship open a window of opportunity for addressing long-standing social injustices.

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.

Designing and Implementing Deliberative Processes for Health Technology Assessment: A Good Practices Report of a Joint HTAi/ISPOR Task Force.

OBJECTIVES: Deliberative processes for health technology assessment (HTA) are intended to facilitate participatory decision making, using discussion and open dialogue between stakeholders. Increasing attention is being given to deliberative processes, but guidance is lacking for those who wish to design or use them. Health Technology Assessment International (HTAi) and ISPOR-The Professional Society for Health Economics and Outcomes Research initiated a joint Task Force to address this gap. METHODS: The joint Task Force consisted of 15 members with different backgrounds, perspectives, and expertise relevant to the field. It developed guidance and a checklist for deliberative processes for HTA. The guidance builds upon the few, existing initiatives in the field, as well as input from the HTA community following an established consultation plan. In addition, the guidance was subject to 2 rounds of peer review. RESULTS: A deliberative process for HTA consists of procedures, activities, and events that support the informed and critical examination of an issue and the weighing of arguments and evidence to guide a subsequent decision. Guidance and an accompanying checklist are provided for (i) developing the governance and structure of an HTA program and (ii) informing how the various stages of an HTA process might be managed using deliberation. CONCLUSIONS: The guidance and the checklist contain a series of questions, grouped by 6 phases of a model deliberative process. They are offered as practical tools for those wishing to establish or improve deliberative processes for HTA that are fit for local contexts. The tools can also be used for independent scrutiny of deliberative processes.

Designing and Implementing Deliberative Processes for Health Technology Assessment: A Good Practices Report of a Joint HTAi/ISPOR Task Force.

OBJECTIVES: Deliberative processes for health technology assessment (HTA) are intended to facilitate participatory decision making, using discussion and open dialogue between stakeholders. Increasing attention is being given to deliberative processes, but guidance is lacking for those who wish to design or use them. Health Technology Assessment International (HTAi) and ISPOR-The Professional Society for Health Economics and Outcomes Research initiated a joint Task Force to address this gap. METHODS: The joint Task Force consisted of fifteen members with different backgrounds, perspectives, and expertise relevant to the field. It developed guidance and a checklist for deliberative processes for HTA. The guidance builds upon the few, existing initiatives in the field, as well as input from the HTA community following an established consultation plan. In addition, the guidance was subject to two rounds of peer review. RESULTS: A deliberative process for HTA consists of procedures, activities, and events that support the informed and critical examination of an issue and the weighing of arguments and evidence to guide a subsequent decision. Guidance and an accompanying checklist are provided for (i) developing the governance and structure of an HTA program and (ii) informing how the various stages of an HTA process might be managed using deliberation. CONCLUSIONS: The guidance and the checklist contain a series of questions, grouped by six phases of a model deliberative process. They are offered as practical tools for those wishing to establish or improve deliberative processes for HTA that are fit for local contexts. The tools can also be used for independent scrutiny of deliberative processes.

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.

Paradigms in operation: explaining pharmaceutical benefit assessment outcomes in England and Germany.

Health technology assessments (HTAs) are used as a policy tool to appraise the clinical value, or cost effectiveness, of new medicines to inform reimbursement decisions in health care. As HTA organisations have been established in different countries, it has become clear that the outcomes of medicine appraisals can vary from country to country, even though the same scientific evidence in the form of randomised controlled trials is available. The extant literature explains such variations with reference to institutional variables and administrative rules. However, little research has been conducted to advance the theoretical understanding of how variations in HTA outcomes might be explained. This paper compares cases of HTA in England and Germany using insights from Kuhn (1962, The Structure of Scientific Revolutions, 2nd edn. Chicago: The University of Chicago Press) and Hall (1993, Policy paradigms, social learning, and the state: the case of economic policymaking in Britain. Comparative Politics 25, 275-296) to demonstrate how policy paradigms can explain the outcomes of HTA processes. The paper finds that HTA outcomes are influenced by a combination of logical issues that require reasoning within a paradigm, and institutional and political issues that speak to the interaction between ideational and interest-based variables. It sets out an approach that advances the theoretical explanation of divergent HTA outcomes, and offers an analytical basis on which to assess current and future policy changes in HTA.

Patient and public involvement in priority-setting decisions in England's Transforming NHS: An interview study with Clinical Commissioning Groups in South London sustainability transformation partnerships.

BACKGROUND: Patient and public involvement (PPI) in health-care commissioning decisions has always been a contentious issue. However, the current moves towards Sustainability and Transformation Partnerships (STPs) in England's NHS are viewed as posing the risk of reducing the impact of current structures for PPI. OBJECTIVE: To understand how different members in clinical commissioning groups (CCGs) understand PPI as currently functioning in their decision-making practices, and the implications of the STPs for it. DESIGN: Thematic analysis of 18 semi-structured interviews with CCG governing body voting members (e.g. clinicians and lay members), non-voting governing body members (e.g. Healthwatch representatives) and CCG staff with roles focussed on PPI, recruited from CCGs in South London STPs. RESULTS: There are contestations amongst CCG members regarding not only what PPI is, but also the role that it currently plays and could play in commissioning decision making in the context of STPs. Three main themes were identified: PPI is 'going out' into the community; PPI as a disruptive power; and PPI as co-production, a 'utopian dream'? CONCLUSIONS: Long-standing issues distinctive to PPI in NHS prioritization decisions are resurfacing with the moves towards STPs, particularly in relation to contradictions between the rhetoric of 'partnership' and reorganizations that foster more top-down control. The interviews reveal pervasive distrusts across a number of levels that are counterproductive to the collaborations upon which STPs rely. And it is argued that such distrust and contestations will continue until a formalized space for PPI in STP priority-setting is created.

Creating sustainable health care systems.

PURPOSE: In order to create sustainable health systems, many countries are introducing ways to prioritise health services underpinned by a process of health technology assessment. While this approach requires technical judgements of clinical effectiveness and cost effectiveness, these are embedded in a wider set of social (societal) value judgements, including fairness, responsiveness to need, non-discrimination and obligations of accountability and transparency. Implementing controversial decisions faces legal, political and public challenge. To help generate acceptance for the need for health prioritisation and the resulting decisions, the purpose of this paper is to develop a novel way of encouraging key stakeholders, especially patients and the public, to become involved in the prioritisation process. DESIGN/METHODOLOGY/APPROACH: Through a multidisciplinary collaboration involving a series of international workshops, ethical and political theory (including accountability for reasonableness) have been applied to develop a practical way forward through the creation of a values framework. The authors have tested this framework in England and in New Zealand using a mixed-methods approach. FINDINGS: A social values framework that consists of content and process values has been developed and converted into an online decision-making audit tool. RESEARCH LIMITATIONS/IMPLICATIONS: The authors have developed an easy to use method to help stakeholders (including the public) to understand the need for prioritisation of health services and to encourage their involvement. It provides a pragmatic way of harmonising different perspectives aimed at maximising health experience. PRACTICAL IMPLICATIONS: All health care systems are facing increasing demands within finite resources. Although many countries are introducing ways to prioritise health services, the decisions often face legal, political, commercial and ethical challenge. The research will help health systems to respond to these challenges. SOCIAL IMPLICATIONS: This study helps in increasing public involvement in complex health challenges. ORIGINALITY/VALUE: No other groups have used this combination of approaches to address this issue.

Addressing vaccination hesitancy in Europe: a case study in state-society relations.

In light of recent outbreaks of diseases such as measles in Europe, policymakers and public health practitioners are seeking strategies to address anti-vaccination attitudes and to increase immunization rates. Identifying effective strategies that will not further alienate vaccination sceptics raises challenges that go to the heart of relations between the state and society. Drawing on accounts of state-society relations, this article discusses how the problem of vaccination hesitancy might be explained from a political science perspective. Discourse-analytical approaches emphasize the importance of storylines, politics and social context in explaining a range of phenomena. Given the number and strength of prevailing discourses in groups with anti-vaccination sentiments, the literature on discourse coalitions can offer perspectives on the challenges that arise in designing strategies to address vaccine hesitancy. Paying closer attention to individual reasons why parents are vaccine hesitant might allow for designing strategies that are more suited to address concerns. However, given the pervasiveness of the discourses of anti-vaccination movements, challenges in reaching citizens who are sceptical of vaccines will remain.

Setting standards and monitoring quality in the NHS 1999-2013: a classic case of goal conflict.

2013 saw the National Health Service (NHS) in England severely criticized for providing poor quality despite successive governments in the previous 15 years, establishing a range of new institutions to improve NHS quality. This study seeks to understand the contributions of political and organizational influences in enabling the NHS to deliver high-quality care through exploring the experiences of two of the major new organizations established to set standards and monitor NHS quality. We used a mixed method approach: first a cross-sectional, in-depth qualitative interview study and then the application of principal agent modeling (Waterman and Meier broader framework). Ten themes were identified as influencing the functioning of the NHS regulatory institutions: socio-political environment; governance and accountability; external relationships; clarity of purpose; organizational reputation; leadership and management; organizational stability; resources; organizational methods; and organizational performance. The organizations could be easily mapped onto the framework, and their transience between the different states could be monitored. We concluded that differing policy objectives for NHS quality monitoring resulted in central involvement and organizational change. This had a disruptive effect on the ability of the NHS to monitor quality. Constant professional leadership, both clinical and managerial, and basing decisions on best evidence, both technical and organizational, helped one institution to deliver on its remit, even within a changing political/policy environment. Application of the Waterman-Meier framework enabled an understanding and description of the dynamic relationship between central government and organizations in the NHS and may predict when tensions will arise in the future. © 2016 The Authors. The International Journal of Health Planning and Management Published by John Wiley & Sons Ltd.

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.

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.

Public involvement in health priority setting: future challenges for policy, research and society.

Purpose - The purpose of this paper is to reflect on the findings of this special issue and discusses the future challenges for policy, research and society. The findings suggest that challenges emerge as a result of legitimacy deficits of both consensus and contestatory modes of public involvement in health priority setting. Design/methodology/approach - The paper 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. Findings - At 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/value - The paper 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 the understanding of public involvement in health prioritization.