Over the last decade, patient and public involvement (PPI) has become a requisite in applied health research. Some funding bodies demand explicit evidence of PPI, while others have made a commitment to developing PPI in the projects they fund. Despite being commonplace, there remains a dearth of engagement with the ethical and theoretical underpinnings of PPI processes and practices. More specifically, while there is a small (but growing) body of literature examining the effectiveness and impact of PPI, there has been (...) relatively little reflection on whether the concept/practice of PPI is internally coherent. Here, the authors unpick a ‘paradox’ within PPI, which highlights a tension between its moral and pragmatic motivations and its implementation. The authors argue that this ‘professionalisation paradox’ means we need to rethink the practice, and purpose, of PPI in research. (shrink)

In an unusual instance of lay participation in biomedical research, U.S. AIDS treatment activists have constituted themselves as credible participants in the process of knowledge construction, thereby bringing about changes in the epistemic practices of biomedical research. This article examines the mechanisms or tactics by which these lay activists have constructed their credibility in the eyes of AIDS researchers and government officials. It considers the inwlications of such interventions for the conduct of medical research; examines some of the ironies, tensions, (...) and limitations in the process; and argues for the importance of studying social movements that engage with expert knowledge. (shrink)

The understanding of appropriate ethical protections for participants of biomedical research has not been static. It has evolved over time, with the evolution of biomedical research as well as social values. Since World War II, there have been four major paradigms of research and research oversight operative in the United States. These paradigms incorporate different values and provide different approaches to research oversight and the protection of research participants.

Ives et al claim to have identified a paradox within patient and public involvement in research1—that is, that the benefits of PPI can never be fully realised because when a lay person is trained to a level at which they can make a useful contribution to research, they lose their unique ‘lay’ perspective. They conclude that we should not train lay people in research before involvement. Ives et al also conclude that we should not develop a collaborative approach to PPI (...) in conducting research. Both these conclusions are flawed. PPI does not always involve the lay person acquiring the same skills as a researcher, and even when it does, that person never loses their unique ‘lay’ perspective.PPI is a complex activity that is highly context dependent. There are many different kinds of involvement requiring different kinds of lay expertise. In many cases the lay person does not need to acquire research skills in order to be effective. They can make useful contributions without being ‘turned into a researcher’. The views of the lay person are complementary to those of the technical experts. PPI provides an insight into the interests and concerns of the participants and …. (shrink)