'I'm sure we made it a better study…': Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study.

Carole Beighton,Steve Dewilde,Fay Hosking,Christina Victor,Tess Harris,Paula Manners,Derek G Cook,Iain M Carey

doi:10.1177/1744629517723485

Carole Beighton, Steve Dewilde + Show 6 more

Open Access

https://doi.org/10.1177/1744629517723485

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Abstract

Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups’ unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice.

Highlights

Within the context of health and social care research, many countries actively engage patient and public involvement (PPI)
It is accepted that service users should be active participants in their own health and well-being (Morrow et al, 2012), and PPI is premised on the assumption that it will improve the way the research is prioritised, commissioned, undertaken, communicated and used (Brett et al, 2012)
This active involvement of service users is seen as adding a unique perspective that can strengthen the quality of the health research (National Institute for Health Research (NIHR), 2015) and ensures that it remains relevant to all those using health and social care services (Oliver et al, 2008)

Summary

Introduction

Within the context of health and social care research, many countries actively engage patient and public involvement (PPI). It is accepted that service users should be active participants in their own health and well-being (Morrow et al, 2012), and PPI is premised on the assumption that it will improve the way the research is prioritised, commissioned, undertaken, communicated and used (Brett et al, 2012) This active involvement of service users is seen as adding a unique perspective that can strengthen the quality of the health research (National Institute for Health Research (NIHR), 2015) and ensures that it remains relevant to all those using health and social care services (Oliver et al, 2008). This health research study used anonymized patient records from a large primary care database of patient records from approximately 400 general practices (GPs) across England (Herrett et al, 2015)

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