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

Sally Crowe; Ade Adebajo; Hothan Esmael; Simon Denegri; Angela Martin; Bob McAlister; Barbara Moore; Martin Quinn; Una Rennard; Julie Simpson; Paula Wray; Philippa Yeeles

doi:10.1186/s40900-020-00229-y

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

Res Involv Engagem. 2020 Sep 16:6:53. doi: 10.1186/s40900-020-00229-y. eCollection 2020.

Authors

Sally Crowe¹, Ade Adebajo², Hothan Esmael³, Simon Denegri⁴, Angela Martin⁵, Bob McAlister⁶, Barbara Moore⁷, Martin Quinn⁸, Una Rennard⁹, Julie Simpson¹⁰, Paula Wray⁹, Philippa Yeeles³

Affiliations

¹ Oxford, UK.
² NIHR INVOLVE, Sheffield University & Barnsley Hospital NHS Trust, Barnsley, UK.
³ NIHR Central Commissioning Facility, Twickenham, UK.
⁴ NIHR National Director for Patients, Carers and the Public, London, UK.
⁵ Research and Development Division, Welsh Government, Cardiff, UK.
⁶ Health and Care Research Wales Public Involvement Delivery Board, Cardiff, UK.
⁷ Health and Care Research Wales Support and Delivery Centre, Cardiff, UK.
⁸ Public Health Agency, Belfast, Northern Ireland.
⁹ NIHR INVOLVE, Southampton, UK.
¹⁰ Chief Scientist Office, Edinburgh, Scotland.

Abstract

Background: Public involvement in research is an established part of the research process in the UK, however there remain questions about what good public involvement in research looks and feels like. Until now public involvement practitioners, researchers and members of the public have looked for answers in examples shared across networks, published case studies, guidance and research articles. Pulling these strands together, the UK Standards for Public Involvement provides six statements (standards) about public involvement in research. They were produced by a partnership of organisations from Scotland, Northern Ireland, Wales and England with contributions from involvement practitioners, public partners, researchers and research funders.

Main body: Each standard has reflective questions, which are designed to encourage standard users to use approaches and behaviours that improve involvement, over time. The standards are designed to be used as a practical tool, and reflect the agreed hallmarks of good public involvement in research for example, flexibility in approaches used, shared learning, and mutual respect.The standards development process is described from the initial idea and scoping, via the appraisal of existing standard sets and integration of values and principles in public involvement in research. The collaborative writing process of and consultation on the draft standard set is described, together with what changed as a result of feedback. The initiation of a year-long testing programme with forty participating research organisations, the experiential feedback and the resulting changes to the standards is summarised.

Conclusion: This commentary paper describes, in some detail, a process to develop a set of six standards for public involvement in research in the UK. Producing a complex, national public involvement initiative is not without its challenges, and in supplementary material partnership members reflect on and share their experiences of standards development. The next phase of integration and implementation is explored with concluding comments from those that tested and helped improve the standards.

Keywords: Collaboration; Framework; Improvement; Partnership; Patient and public involvement; Research; Standards.

Publication types

Editorial