Patient or public involvement in health research is increasingly expected as a matter of policy. In theory, PPI can contribute both to the epistemic aims intrinsic to research, and to extrinsically valued features of research such as social inclusion and transparency. In practice, the aims of PPI have not always been clear, although there has been a tendency to encourage the involvement of so-called ordinary people who are regarded as representative of an assumed patient perspective. In this paper we focus (...) on the epistemic potential of PPI, using theoretical work in epistemology to develop a nuanced account of patients’ experiential knowledge and how this might contribute directly to conceptual development, hypothesis generation and data interpretation. We also consider how some features of health research pose barriers to this kind of epistemic contribution. Drawing on Miranda Fricker’s idea of testimonial injustice, we explore how disciplinary indicators of credibility in clinical and academic health research contexts might be wrongly applied to those involved in PPI, undermining their potential to contribute. Finally we argue for a range of strategies to maximize opportunities for patients to engage with research teams and make epistemologically significant contributions to research. (shrink)

PONIC P, REID C and FRISBY W.Nursing Inquiry2010;17: 324–335 Cultivating the power of partnerships in feminist participatory action research in women’s healthFeminist participatory action research integrates feminist theories and participatory action research methods, often with the explicit intention of building community–academic partnerships to create new forms of knowledge to inform women's health. Despite the current pro‐partnership agenda in health research and policy settings, a lack of attention has been paid to how to cultivate effective partnerships given limited resources, competing agendas, (...) and inherent power differences. Based on our 10+ years individually and collectively conducting women's health and feminist participatory action research, we suggest that it is imperative to intentionally developpower‐withstrategies in order to avoid replicating the power imbalances that such projects seek to redress. By drawing on examples from three of our recent feminist participatory action projects we reflect on some of the tensions and complexities of attempting to cultivate power‐with research partnerships. We then offer skills and resources needed by academic researchers to effectively harness the collective resources, agendas, and knowledge that each partner brings to the table. We suggest that investing in the process of cultivating power‐with research partnerships ultimately improves our collective ability to understand and address women's health issues. (shrink)

This latest work from one of the world's leading political philosophers will appeal to audiences from a variety of fields, including philosophy, political science, women's studies, ethnic studies, sociology, and communications studies.

Engaging citizens is vital to achieving people‐centred health research. This paper aims to put attention to dynamics of power and dynamics of difference back at the centre of citizen engagement in health research priority‐setting. Without attention to power and difference, engagement can lead to presence without voice and voice without influence, particularly for disadvantaged and marginalised groups. By analysing six key bodies of literature, the paper first identifies the different components of engagement—who initiates, for what purpose, who participates, and how (...) they participate—and the dynamics of power and dynamics of difference relevant to them. For each component of engagement, the ethical considerations relating to those dimensions of power and dimensions of difference are characterised for the research priority‐setting context and preliminary guidance on how they might be addressed is provided. An initial framework comprised of a series of questions reflecting these ethical considerations has been developed for use by researchers and citizens when designing engagement processes for research projects. Where researchers and citizens attend to the framework's questions and then revise their priority‐setting processes’ design to better represent diversity and mitigate power disparities, more inclusive citizen engagement is promoted. Disadvantaged and marginalised groups are more likely to be present and heard, which, in turn, will help generate research projects with topics and questions that encompass and more accurately reflect their health needs. (shrink)

Research on human genetic variation can present collective risks to all members of a socially identifiable group. Research that associates race or ethnicity with a genetic disposition to disease, for example, presents risks of group discrimination and stigmatization. To better protect against these risks, some have proposed supplemental community-based reviews of research on genetic differences between populations. The assumption behind these appeals is that involving members of study populations in the review process can help to identify and minimize collective risks (...) that otherwise could go unnoticed. In contrast to this position, critics have argued that supplemental community-based reviews are unnecessary, impractical, and morally problematic. This paper is our attempt to advance this debate by distinguishing the various goals of community review and the forms that it can take. (shrink)