Reporting on patient and public involvement (PPI) in research publications: Using the GRIPP2 checklists with lay co-researchers

© The Author(s). 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License. https://creativecommons.org/licenses/by/4.0/Background: 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. 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). Methods: A 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. Results: Out 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. Conclusions: This 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.Peer reviewe

Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes.

BACKGROUND: Public involvement in research on sensitive subjects, such as death and dying, can help to ensure that questions are framed to reflect the interests of their peers, develop a shared understanding of issues raised, and moderate the often unequal power relationship between researcher and participant. This paper describes the contribution and impact of older members of a Public Involvement in Research group (PIRg) to a study on living and dying in care homes. METHODS: A longitudinal study, with a mixed method approach, its aims were to capture key experiences, events and change over one year, of older people resident in participating care homes in the East of England. Residents were interviewed up to three times and their case notes were reviewed four times over the year. Interviews were semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg) contributed to preliminary discussions about the research and three were involved with many of the subsequent stages of the research process including the facilitation of discussion groups with residents. RESULTS: There were three areas where the involvement of the Public Involvement in Research group (PIRg) positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration with the residents in the care homes, the discussion and interpretation of emergent findings. PIRg members were of similar age to the residents and their involvement provided different and often more reflective insights of the significance of the findings for the participants. There were examples where decision making about the range of PIRg participation was not always negotiable, and this raised issues about power relationships within the team. Nevertheless, PIRg members expressed personal benefit and satisfaction through participating in the research and a commitment to continue to support research with this older age group. CONCLUSIONS: The contribution of the PIRg supported a successful recruitment process that exceeded response rates of other studies in care homes. It safeguarded residents during the conduct of research on a sensitive topic and helped in validating the interview data gathered by the researchers through the discussion groups facilitated by the PIRg. There were power differentials that persisted and affected PIRg participation. The study has showed the value of developing job descriptions and a more formal means of setting out respective expectations. Future research may wish to elicit the views of focal participants in such studies about the mediation of research by public involvement in research.RIGHTS : This article is licensed under the BioMed Central licence at http://www.biomedcentral.com/about/license which is similar to the 'Creative Commons Attribution Licence'. In brief you may : copy, distribute, and display the work; make derivative works; or make commercial use of the work - under the following conditions: the original author must be given credit; for any reuse or distribution, it must be made clear to others what the license terms of this work are

How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation

Objectives: To explore how embedded patient and public involvement (PPI) is within mainstream health research following two decades of policy-driven work to underpin health research with PPI in England. Methods: Realist evaluation using Normalization Process Theory as a programme theory to understand what enabled PPI to be embedded as normal practice. Data was collected through a national scoping and survey, and qualitative methods to track PPI processes and impact over time within 22 nationally funded research projects. Results: In research studies that were able to create reciprocal working relationships and to embed PPI this was contingent on: the purpose of PPI being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of PPI; PPI opportunities being provided throughout the research; and ongoing evaluation of PPI. Key contested areas included: whether to measure PPI impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as ‘authentically’ lay; scaling-up PPI embedded within a research infrastructure rather than risk token presence ; and whether PPI can have a place within basic science. Conclusion: While PPI can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing the moral and methodological imperatives

RAPPORT - Research with Patient and Public Involvement : a Realist Evaluation

Non peer reviewe

Public Involvement in Research : Experiences of Older People Living and Dying in Care Homes (EPOCH)

Non peer reviewe

RAPPORT: Research with Patient and Public involvement: a Realist Evaluation. Findings from a national scoping exercise and survey

This research seeks to examine the extent and types of public involvement (PI) in a range of national research studies. The aim is to assess different approaches to PI amongst six different research topic areas; cystic fibrosis, diabetes, arthritis, dementia, learning disabilities and public health. The presentation will describe key findings from the first two phases of the study; a national scoping of PI in current or recent research studies listed on the UKCRN portfolio; and an on-line survey of 300 chief investigators. Plans for the third stage; the tracking of up to 20 case studies in four regions over 18 months will also be presented. It is hoped the audience will gain some understanding of the varied approaches to PI between and within topic areas and levels of PI involvement in different types of research design. Chief investigators’ comments about the benefits and challenges of PI will be discussed alongside early findings around contextual factors that appear to impact on how PI is incorporated within studies. The RAPPORT research has PI at all stages from research proposal development, as co-applicants, advisory committee membership, design of data collection tools, co-researchers in the case study phase through to dissemination

Research design boundaries for qualitative research, stakeholder and patient and public involvement, and why they matter

Within current mainstream understandings of patient and public involvement (PPI) in health research, a clear distinction is made between what ‘involvement’ in research is: ‘research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them'1 and what it is not: namely ‘engagement with’ and ‘participation in’ research. Research evidence describes problems than can arise when such distinctions are unclear or misunderstood (often by those new or unfamiliar with PPI); or when distinctions are intentionally blurred e.g. by ‘dual roles’ being created within some projects, where research participants also advise on the conduct of projects. What is less widely examined, however, is the blurring of boundaries between the object of enquiry which is the business of PPI for that project, the data which is the object of qualitative collection involving discussion with participants and the purposeful research activities which are best progressed through engagement with stakeholders. This poster draws upon case study findings from two recent, similar National Institute for Health Research (NIHR)-funded evaluations of PPI in health research: RAPPORT (England-wide) and IMPRESS (regional research programme-specific), pertaining to how researchers (from various disciplines, using various research designs) within different case study research projects can blur the boundaries between qualitative research, stakeholder events and PPI. We pose questions pertaining to the consequences of blurred research design boundaries for the success of outcomes of public-research collaborations. We query why, and to what extent, such distinctions matter in co-producing knowledge and in measuring the impact of various investments in collaborative research activities

Views and Experiences of End of Life Care of Older People Living in Care Homes

Non peer reviewe