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Role of patient and public involvement in implementation research: a consensus study
  1. Kara A Gray-Burrows1,
  2. Thomas A Willis2,
  3. Robbie Foy2,
  4. Martin Rathfelder3,
  5. Pauline Bland3,
  6. Allison Chin3,
  7. Susan Hodgson3,
  8. Gus Ibegbuna3,
  9. Graham Prestwich3,
  10. Kirsty Samuel3,
  11. Laurence Wood3,
  12. Farhat Yaqoob3,
  13. Rosemary R C McEachan4
  1. 1 School of Dentistry, University of Leeds, Leeds, UK
  2. 2 Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
  3. 3 ASPIRE PPI Panel, Leeds Institute for Health Sciences, University of Leeds, Leeds, UK
  4. 4 Bradford Institute for Health Research, Bradford Teaching Hospitals NHS Foundation Trust, BD9 6RJ., Bradford, UK
  1. Correspondence to Dr Rosemary R C McEachan, Bradford Institute for Health Research, Bradford Teaching Hospitals NHS Foundation Trust, BD9 6RJ. ; rosie.mceachan{at}bthft.nhs.uk

Abstract

Background Patient and public involvement (PPI) is often an essential requirement for research funding. Distinctions can be drawn between clinical research, which generally focuses on patients, and implementation research, which generally focuses on health professional behaviour. There is uncertainty about the role of PPI in this latter field. We explored and defined the roles of PPI in implementation research to inform relevant good practice guidance.

Methods We used a structured consensus process using a convenience sample panel of nine experienced PPI and two researcher members. We drew on available literature to identify 21 PPI research roles. The panel rated their agreement with roles independently online in relation to both implementation and clinical research. Disagreements were discussed at a face-to-face meeting prior to a second online rating of all roles. Median scores were calculated and a final meeting held to review findings and consider recommendations.

Results Ten panellists completed the consensus process. For clinical research, there was strong support and consensus for the role of PPI throughout most of the research process. For implementation research, there were eight roles with consensus and strong support, seven roles with consensus but weaker support and six roles with no consensus. There were more disagreements relating to PPI roles in implementation research compared with clinical research. PPI was rated as contributing less to the design and management of implementation research than for clinical research.

Conclusions The roles of PPI need to be tailored according to the nature of research to ensure authentic and appropriate involvement. We provide a framework to guide the planning, conduct and reporting of PPI in implementation research, and encourage further research to evaluate its use.

  • Implementation research
  • clinical research
  • patient and public involvement (PPI)
  • health professionals
  • consensus panel

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/

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Footnotes

  • Contributors RM, RF, TW, KG-B conceived the study. All authors contributed to study design, management, analysis and interpretation. RM, KG-B, TW, RF drafted the manuscript. All authors revised the manuscript and approved the final submission.

  • Funding This paper summarises independent research funded by the National Institute for Health Research under its Programme Grants for Applied Research scheme (RP-PG-1209-10040). RM was supported by the NIHR CLAHRC Yorkshire and Humber.

  • Disclaimer The views and opinions expressed are those of the authors, 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.

  • Ethics approval UK National Research Ethics Service (14/SC/1393).

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

  • Data sharing statement No relevant data are available.