Evidence Library

Title: The burden of proof: The process of involving young people in research.
Author: Gail Dovey‐Pearce, Sophie Walker, Sophie Fairgrieve, Monica Parker, Tim Rapley.
Date Published: 2019
Reference: Health Expectations ePub ahead of print. doi.org/10.1111/hex.12870
Are service users or carers authors: No/Not Known

Abstract: Patient and public involvement in research includes non‐academics working with researchers in a range of ways. Health and social care funding bodies require involvement in research projects. Current debates focus on a lack of “proof” that involvement impacts on the quality of research. The working relationships between researchers and those involved also need to be understood more fully. This study describes the experiences of adult academics and young people, working together on a large‐scale, UK health research programme. Participants’ were asked about their views on the process and outcomes of their work together, in interviews and focus groups. The findings suggest that success requires repeated interactions that can change over time to respond to the circumstances. The factors that help include having clear mechanisms for negotiation and facilitation, being open to change, and working face‐to‐face. The authors conclude that young people don’t need to prove the worth of their involvement, but more insight would be gained from understanding how to make the involvement work well and what it achieves.

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Categories: health
impact on researchers
impact of public involvement
reflecting on public involvement in research
journal article

Date Entered: 2019/03/18

Date Edited: 2019/03/18

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