It is generally accepted that we need more research into concussions and other injuries with potential long-term effects in sport because such research underpins effective, evidence-based prevention, management, support, and treatment. This paper provides an analysis of the obligations of sports federations to support and facilitate such research, as well as an analysis of the role active participants in the sport should have in the research process. The paper focuses on concussion and concussion research, though very similar arguments apply to (...) other common sports injuries with potential long-term effects. The paper argues that sports federations have a moral obligation and a prudential interest in initiating, facilitating, and funding concussion research. This follows from their duty of care towards active participants and from considerations of reciprocity. The ability to discharge these research obligations depends on the resources available to a particular federation, but those who can discharge them should do so. The paper further argues that athletes and other active participants in sport should be involved in all aspects of the concussion research process from conception to design, i.e. that Active Participant Involvement and Engagement (APIE) should be a non-negotiable element of concussion research projects. This is supported by instrumental reasons, but also by philosophical argument based on standpoint epistemology and on ethical arguments related to the interests of active participants. Standpoint epistemology is the epistemological position that the knowledge a person has and can have depends on that person’s standpoint in the world. Keywords: Concussion, funding, participant involvement, sport, sport association, sport federation. (shrink)

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. Bringing this (...) function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research. (shrink)

In recent years, children and young people (CYP) have been increasingly included in patient and public involvement (PPI) in health research and innovation. Such initiatives intend to give a voice to CYP in such matters. Given that it is debated whether PPI in health care fosters the values of participation, public discussion and decision making put forward by deliberative democracy, this article examines three sets of challenges concerning the involvement of CYP by focusing on age biases. After describing some existing (...) initiatives, the paper critically examines why CYP are involved, how the CYP group is constituted and then investigates the moral status of CYP in biomedical settings. It shows that the rationale for involving CYP in PPI is mainly top-down and adult-centric, thereby questioning the authentic participation in decision making. It also suggests that to ensure democratic inclusion, the CYP group should be constituted by considering both age and politics. Lastly, the article indicates that, despite the increasing recognition of child-specific rights, the sociocultural norms and power dynamics in pediatrics undermine their moral status and challenge political equality. These three sets of considerations offer a preliminary theoretical contribution toward improving democratic legitimacy and representation of CYP in health research and innovation. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)