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Health policy
Research
Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future
  1. Sophie Staniszewska1,
  2. Simon Denegri2,
  3. Rachel Matthews3,
  4. Virginia Minogue4
  1. 1 Warwick Research in Nursing, Division of Health Sciences, Warwick Medical School, Division of Health Sciences, University of Warwick, Coventry, UK
  2. 2 NIHR National Director for Patients, Carers and the Public UCL School of Life and Medical Sciences, London, UK
  3. 3 National Institute for Health Research (NIHR) Collaboration for Leadership and Applied Health Research and Care (CLAHRC), Northwest London, Imperial College, London, UK
  4. 4 NHS England, Leeds, UK
  1. Correspondence to Professor Sophie Staniszewska; Sophie.Staniszewska{at}warwick.ac.uk

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.

  • patient and public involvement
  • public engagement
  • health policy

This is an open access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

https://doi.org/10.1136/bmjopen-2017-017124

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    Footnotes

    • Contributors SD was chair of the Review Group, led on the development of the strategic vision and mission and recommendations in collaboration with the Review Group. SS was vice-chair and supported SD. RM led on the operational aspects of the Review, including the analysis. VM, SS and SD were involved in analysis. SS led the writing of the analysis paper, drawing on the Going the Extra Mile policy report written by SD and RM in collaboration with the Expert Advisory Group.

    • Funding This work was supported by National Institute for Health Research. SS is part-funded by CLAHRC WM. RM is fully funded by NIHR CLAHRC NWL. The ‘Going the Extra Mile’ policy review was funded by the National Institute for Health Research. This article presents independent research funded by the National Institute for Health Research (NIHR) under the Collaborations for Leadership in Applied Health Research and Care (CLAHRC) programme for North West London and West Midlands.

    • Disclaimer The views expressed in this publication 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.

    • Data sharing statement No additional data available.

    • Author note Dr. Virginia Minogue was at NHS England until October 2017.