Article Text
Abstract
Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’ or ‘successful’ public involvement looks like. In an effort to provide guidance to investigators and research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The Standards have critical implications for the future of biomedical research in the UK and in other countries as researchers and funders abroad look to the Standards as a model for their own policy development. We assess the Standards and find that despite offering useful suggestions for dealing with practical challenges associated with public involvement, the Standards fail to address fundamental questions about when, why and with whom public involvement should be undertaken in the first place. We show that presented without this justificatory context, many of the recommendations in the Standards are, at best, fragments that require substantial elaboration by those looking to apply the Standards in their own work and, at worst, subject to potentially harmful misapplication by well-meaning investigators. As funding bodies increasingly push for public involvement in research, the key lesson of our analysis is that future recommendations about how public involvement should be conducted cannot be coherently formulated without a clear sense of the underlying goals and rationales for public involvement.
- research ethics
- scientific research
Statistics from Altmetric.com
Read the full text or download the PDF:
Other content recommended for you
- Patient and public involvement in emergency care research
- GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research
- Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study
- Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study
- Public and patient involvement in child health research and service improvements: a survey of hospital doctors
- Patient and public involvement in emergency care research: a scoping review of the literature
- Public and patient involvement in paediatric research
- Patient and public involvement in research and the Cancer Experiences Collaborative: benefits and challenges
- Public involvement in the governance of population-level biomedical research: unresolved questions and future directions
- Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future