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

## TL;DR

The paper highlights how complex NHS procedures can unintentionally exclude non-employed peer researchers, undermining efforts to make healthcare research more inclusive.

## Contribution

It presents a reflective case study showing how procedural ambiguities in the NHS hinder public involvement in research.

## Key findings

- A peer researcher resigned due to delays and lack of clear guidance on NHS approval processes.
- Current NHS procedures may perpetuate systemic inequality by complicating public involvement.
- Collaborative reflection between researchers and governance departments is needed to improve practices.

## Abstract

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.

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.

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.

There is growing support for involving the public in healthcare research, because ‘peers’, i.e., people with lived experience of the topic, bring important insights. However, when people are not employed by a university or the National Health Service (NHS), the processes they may have to go through to help conduct the research may be very complicated. This can discourage them from becoming involved. This paper describes the attempts of a research student (BB) and a family carer peer researcher (YO) to design and conduct a study collaboratively. They planned to hold online discussion groups with family carers. To do this, both the peer researcher and the research student had to first apply to the local NHS Research & Development department for a letter demonstrating that they had undertaken the relevant checks to meet with NHS service users. However, this department was unsure which checks were needed for the peer researcher. National guidelines and advice from others working in the field were unclear or contradictory. Everyone worked together for 6 months to find this out, but eventually, YO resigned. Our story reveals how systems can make it difficult for members of the public to join a research team, particularly those who are not part of established organisations. We aim to raise awareness of what must be changed to reduce harms. All those working in research have a shared responsibility to work with each other and with the public to design and promote clearer processes, to make research more equal and inclusive in the future.