Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future

Abstract

Objectives: To review the progress of public involvement (PPI) in NIHR (National Institute for Health Research) research, identify barriers and enablers, reflect on the influence of PPI on the wider health research system in the UK and internationally and develop a vision for public involvement in research for 2025. The developing evidence base, growing institutional commitment and public involvement activity highlight its growth as a significant international social movement.

Design: The 'Breaking Boundaries Review' was commissioned by the Department of Health. An expert advisory panel was convened. Data sources included: an online survey, international evidence sessions, workshop events, open submission of documents and supporting materials and existing systematic reviews. Thematic analysis identified key themes. NVivo was used for data management. The themes informed the report's vision, mission and recommendations, published as 'Going the Extra Mile-Improving the health and the wealth of the nation through public involvement in research'. The Review is now being implemented across the NIHR.

Results: This paper reports the Review findings, the first of its type internationally. A range of barriers and enablers to progress were identified, including attitudes, resources, infrastructure, training and support and leadership. The importance of evidence to underpin practice and continuous improvement emerged. Co-production was identified as a concept central to strengthening public involvement in the future. The Vision and Mission are supported by four suggested measures of success, reach, refinement, relevance and relationships.

Conclusions: The NIHR is the first funder of its size and importance globally to review its approach to public involvement. While significant progress has been made, there is a need to consolidate progress and accelerate the spread of effective practice, drawing on evidence. The outcomes of the Review are being implemented across the NIHR. The findings and recommendations have transferability for other organisations, countries and individuals.

Keywords: health policy; patient and public involvement; public engagement.