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National Standards for Public Involvement in Research: missing the forest for the trees
  1. Matthew S McCoy1,
  2. Karin Rolanda Jongsma2,
  3. Phoebe Friesen3,
  4. Michael Dunn3,
  5. Carolyn Plunkett Neuhaus4,
  6. Leah Rand3,5,
  7. Mark Sheehan3
  1. 1Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA
  2. 2Medical Humanities, Julius Center, University Medical Center, Utrecht University, Utrecht, The Netherlands
  3. 3Nuffield Department of Population Health, The Ethox Centre, University of Oxford, Oxford, UK
  4. 4The Hastings Center, Garrison, New York, USA
  5. 5Board on Health Sciences Policy, National Academies of Science, Engineering, and Medicine, Washington, DC, USA
  1. Correspondence to Dr Mark Sheehan, Nuffield Department of Population Health, The Ethox Centre, University of Oxford, Oxford OX3 7LG, UK; mark.sheehan{at}philosophy.ox.ac.uk

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

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Footnotes

  • Contributors MSM prepared the initial draft of the paper. All other authors provided conceptual input and edited early drafts.

  • Funding MS, PF and LR were supported by the National Institute for Health Research (NIHR) Oxford Biomedical Research Centre (grant BRC-1215-20008) to the Oxford University Hospitals NHS Foundation Trust and the University of Oxford.

  • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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