Value, transparency, and inclusion: A values-based study of patient involvement in musculoskeletal research.

E Bradshaw,A Burston,V Wylde,K Whale,R Gooberman-Hill,Sara Rubinelli

doi:10.1371/journal.pone.0260617

Abstract

Patient and public involvement work (PPI) is essential to good research practice. Existing research indicates that PPI offers benefits to research design, conduct, communication, and implementation of findings. Understanding how PPI works and its value helps to provide information about best practice and highlight areas for further development. This study used a values-based approach to reporting PPI at a Research Unit focused on musculoskeletal conditions within a UK medical school. The study was conducted between October 2019 and January 2020 using Gradinger's value system framework as a theoretical basis. The framework comprises three value systems each containing five clusters. All PPI members and researchers who had attended PPI groups were invited to participate. Participants completed a structured questionnaire based on the value system framework; PPI members also provided further information through telephone interviews. Data were deductively analysed using a framework approach with data mapped onto value systems. Twelve PPI members and 17 researchers took part. Views about PPI activity mapped onto all three value systems. PPI members felt empowered to provide their views, and that their opinions were valued by researchers. It was important to PPI members that they were able to 'give back' and to do something positive with their experiences. Researchers would have liked the groups to be more representative of the wider population, patients highlighted that groups could include more younger members. Researchers recognised the value of PPI, and the study highlighted areas where researchers members might benefit from further awareness. Three areas for development were identified: (i) facilitating researcher engagement in training about the value and importance of PPI in research; (ii) support for researchers to reflect on the role that PPI plays in transparency of healthcare research; (iii) work to further explore and address aspects of diversity and inclusion in PPI.

Highlights

Patient and public involvement (PPI) is considered to be a key part of good research practice [1, 2]
Views about PPI activity mapped onto all three value systems
PPI members felt empowered to provide their views, and that their opinions were valued by researchers

Summary

Introduction

Patient and public involvement (PPI) is considered to be a key part of good research practice [1, 2]. Recognition of the importance and value of PPI in research has grown substantially in the last decade. Funding bodies such as the UK National Institute for Health Research (NIHR) include a mandatory section on PPI activities as part of the grant application process in applied research. The UK Department of Health and Social Care supports PPI through funding INVOLVE [1], a national advisory group that supports active public involvement in the NHS, public health, and social care research; INVOLVE provides guidance on best practice. Patient and public involvement work (PPI) is essential to good research practice. This study used a values-based approach to reporting PPI at a Research Unit focused on musculoskeletal conditions within a UK medical school

Methods

Results

Conclusion