Literature DB >> 30337451

National Standards for Public Involvement in Research: missing the forest for the trees.

Matthew S McCoy1, Karin Rolanda Jongsma2, Phoebe Friesen3, Michael Dunn3, Carolyn Plunkett Neuhaus4, Leah Rand3,5, Mark Sheehan3.   

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. © Author(s) (or their employer(s)) 2018. No commercial re-use. See rights and permissions. Published by BMJ.

Keywords:  research ethics; scientific research

Mesh:

Year:  2018        PMID: 30337451     DOI: 10.1136/medethics-2018-105088

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  14 in total

Review 1.  Participatory research in health promotion: a critical review and illustration of rationales.

Authors:  Janneke Harting; Kasper Kruithof; Lotte Ruijter; Karien Stronks
Journal:  Health Promot Int       Date:  2022-06-23       Impact factor: 3.734

2.  Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects.

Authors:  Éidín Ní Shé; Jennifer Cassidy; Carmel Davies; Aoife De Brún; Sarah Donnelly; Emma Dorris; Nikki Dunne; Karen Egan; Michel Foley; Mary Galvin; Mary Harkin; Martha Killilea; Thilo Kroll; Vanessa Lacey; Veronica Lambert; Sarah McLoughlin; Derick Mitchell; Edel Murphy; Purity Mwendwa; Emma Nicholson; Deirdre O'Donnell; Laura O'Philbin
Journal:  Res Involv Engagem       Date:  2020-08-03

3.  'All hands-on deck', working together to develop UK standards for public involvement in research.

Authors:  Sally Crowe; Ade Adebajo; Hothan Esmael; Simon Denegri; Angela Martin; Bob McAlister; Barbara Moore; Martin Quinn; Una Rennard; Julie Simpson; Paula Wray; Philippa Yeeles
Journal:  Res Involv Engagem       Date:  2020-09-16

4.  Regional working in the East of England: using the UK National Standards for Public Involvement.

Authors:  Elspeth Mathie; Helena Wythe; Diane Munday; Graham Rhodes; Penny Vicary; Paul Millac; Julia Jones
Journal:  Res Involv Engagem       Date:  2018-12-06

5.  Understanding and using patient experiences as evidence in healthcare priority setting.

Authors:  Leah Rand; Michael Dunn; Ingrid Slade; Sheela Upadhyaya; Mark Sheehan
Journal:  Cost Eff Resour Alloc       Date:  2019-09-23

6.  Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking.

Authors:  Keymanthri Moodley; Chad Beyer
Journal:  Biopreserv Biobank       Date:  2019-11-25       Impact factor: 2.300

7.  Using the United Kingdom standards for public involvement to evaluate the impact of public involvement in a multinational clinical study.

Authors:  Annmarie Nelson; Simon Noble; Kathy Seddon; Jim Elliott; Miriam Johnson; Clare White; Max Watson
Journal:  Res Involv Engagem       Date:  2021-04-30

8.  Conceptualising and constructing 'diversity' through experiences of public and patient involvement in health research.

Authors:  Joanna Reynolds; Margaret Ogden; Ruth Beresford
Journal:  Res Involv Engagem       Date:  2021-07-22

9.  Who should I involve in my research and why? Patients, carers or the public?

Authors:  Kristina Staley; Jim Elliott; Derek Stewart; Roger Wilson
Journal:  Res Involv Engagem       Date:  2021-06-14

10.  How to achieve trustworthy artificial intelligence for health.

Authors:  Kristine Bærøe; Ainar Miyata-Sturm; Edmund Henden
Journal:  Bull World Health Organ       Date:  2020-01-27       Impact factor: 9.408

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