Peer researchers in NHS research: approved in principle, undermined in practice?

Abstract

Background: Despite the increasing support and expectation for involving people with lived experience in healthcare research in England, challenges persist when navigating organisational structures. This can result in unintentional exclusion and disempowerment. Main body: This reflective case report describes the experiences of a doctoral student working with their Research & Development department to determine the checks required for a peer researcher (without an employment contract) to co-facilitate focus groups with National Health Service (NHS) users. Despite best efforts, the absence of clear guidance about the necessary processes for obtaining her approval documents (known as ‘Research Passports in the UK) resulted in delays, distress, and the peer researcher resigning. Current procedural complexities of facilitating peer research in the NHS may be perpetuating rather than addressing systemic inequality. Reflecting together as academics and research governance departments, we hope to illuminate steps that can be taken in advance to mitigate future harms. Conclusions: By taking shared responsibility for what needs to be changed, we hope to open a dialogue that will create collaborative and consistent practices aligned with the principles and aspirations of involving peer researchers.