Abstract

BackgroundPatient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. There has been a growth in research publications that describe PPI in the research process, but the frequency and detail of PPI reporting varies considerably. This paper reports on a collaborative study that aimed to describe the extent of PPI in publications from research funded by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England (EoE), part of the National Institute of Health Research (NIHR) in England (2014–2019).MethodsA descriptive study of all research publications (1st January 2014 to 31st October 2017) funded by the NIHR CLAHRC EoE. Members of the Public Involvement in Research group (PIRg), at the University of Hertfordshire, were actively involved, with four PIRg co-researchers. We used an internationally recognised reporting checklist for PPI called the GRIPP2 (Guidance for Reporting Involvement of Patients and the Public, Version 2) to guide the reviewing process.ResultsOut of 148 research papers identified, 16 (14%) reported some aspect of PPI activity and were included for review. Ten of the publications (63%) acknowledged the contributions of PPI individuals and/or groups and five had PPI co-authors. There was considerable variation in the PPI reported in the publications, with some ‘missed opportunities’ to provide detail of PPI undertaken. The perspectives of the co-researchers shaped the reporting of the results from this study. The co-researchers found the GRIPP2-SF (short form) to be useful, but the GRIPP2-LF (long form) was considered over complicated and not user-friendly.ConclusionsThis is one of the first studies to involve lay co-researchers in the review of PPI reporting using the GRIPP2 reporting checklists (GRIPP2-SF and GRIPP2-LF). We make recommendations for a revised version of the GRIPP2-SF, with clearer instructions and three additional sections to record whether PPI is reported in the abstract or key words, in the acknowledgements section, and whether there are PPI co-authors. We also recommend the provision of training and support for patient and public peer reviewers.

Highlights

  • Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that patient and public involvement (PPI) improves the quality, relevance and outcomes of research

  • We wanted to see how lay co-researchers found the use of a checklist developed to assess the reporting of PPI: the ‘Guidance for Reporting Involvement of Patients and the Public, Version 2’ (GRIPP2)

  • We have added three main headings with additional aspects of PPI reporting considered important by the co-researchers, namely; whether or not there were PPI co-authors; whether PPI or similar terminology were included as key words or in the abstract; and whether there was the mention of PPI contributors in the acknowledgement section

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Summary

Introduction

Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. Members of the public include a wide range of people including: patients, potential patients, family carers, service users, people using health and social care services as well as people from organisations that represent people who use services [9]. To support this growing area of research, a range of patient and public involvement (PPI) guidelines, frameworks and standards have been developed for researchers and PPI contributors alike [9,10,11,12,13]. In the UK, National Standards for Public Involvement were launched in 2018 and updated in November 2019 to “improve the quality and consistency of public involvement in research” [14]

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