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

In their recently published paper, Bryher, Peter and the Joint R&D Office reflect on potential systemic inequalities that were revealed by trying to involve a peer researcher in cofacilitating focus groups, and propose some solutions.    

Our experience

Our reflective case study explores some of the challenges of trying to involve a family carer (who we will now call a peer researcher) as a cofacilitator, when conducting focus groups as part of my PhD. The peer researcher and I codesigned the study, which entailed cofacilitating online focus groups with other family carers who had attended courses in Recovery Colleges across England.

Some Recovery Colleges are part of NHS mental health services and to be able to gather data from NHS service users, we had to apply to the Joint R&D Office of SLaM and IoPPN, who then undertook the relevant checks on members of the research team.

The process was much more difficult than anticipated and over time, this caused frustrating delays and offence to the peer researcher, which unfortunately but understandably led to her deciding to leave involvement in the research world. She supports our endeavours to continue working to address exclusion and inequality in involvement practices in healthcare research.

Issues highlighted

• Whilst participatory research is more common in international research or community settings, there are additional administrative complications to conducting participatory research in NHS settings.

• There is a lack of clear guidelines or consensus amongst academics and Research and Development teams for the processes to ensure the safety of peer researchers to work with NHS patients.

• There is a particular uncertainty around research approval for peer researchers who are not contracted with existing research organisations.

• Peer researchers should feel equal to other members of the research team. The excessive burden of administrative tasks related to obtaining consent should be minimised to ensure their time and expertise are respected and involvement is rewarding for them.

• Systemic bureaucratic challenges are often more burdensome for those who are not members of official organisations, and therefore contribute to exclusion and lack of representation in research involvement.

• Requests for CVs from peer researchers may wrongly imply that they are required to have formal research qualifications to be involved, when this information is not needed.
  
  When reasons are not given to explain why information is requested from applicants, peer researchers may feel scrutinised during these approval processes. This is more distressing if they have experienced discriminatory treatment by organisations in the past, something prevalent for those from racially marginalised groups.

What we did

The Joint R&D Office of SLaM and IoPPN were highly responsive as these issues arose, and afterwards we reflected with them about what might have gone wrong. Together, we distilled these experiences into a paper that describes our experiences and suggests solutions to address some of the issues that might lead to exclusion.

The Joint R&D Office are now reviewing their Standard Operating Procedures, and have already discontinued requests for CVs from research teams.

Implications for future

• NIHR guidance advises that a risk assessment be carried out for the safety of peer researchers during their role, and we argue this should include distress caused during the application and administrative process.

• Research and Development teams should ask for alternative CVs which confine their inquiries to relevant criteria for peer researchers.

• Academic researchers must be clear when public involvement goes wrong or causes harm, as well as the benefits it can bring, so there is an awareness of the potential challenges amongst new researchers. It is our responsibility, not the peer researchers, to speak up about inequality.
• A joined-up approach is needed where senior academics, novices and Research and Development teams work with non-salaried peer researchers to collaboratively reach a mutual understanding and create consistent arrangements.

For a comprehensive and detailed guide on the processes for involving the public in research, our author Peter Bates provides a collection of free resources on his website — How To Guides – Peter Bates.