How and why you should be investing in peer-led research

Combining academic, peer research and peer support into a project, should be viewed as a more holistic approach to research, one which increases the validity of data and findings while also placing additional focus on the well-being of the participants.

Peer Researchers and academic researchers both have value within community-based research*. Academic researchers bring a certain level of knowledge about research methodologies, methods, and ethics to research processes. However, the value of academic researchers is generally more well known within the general population compared to Peer Researchers. According to the Young Foundation (2020), peer led research is a form of a research method, where individuals with lived experience are highly involved in and direct the scope of research.

It realizes that Peer Researchers are competent in undertaking research of any level (Higgins et al, 2007). By going against standard guidelines of academic research, more and more research is now undertaken by individuals with lived experience. There are many advantages to approaching research this way: barriers between the researcher and ‘participants’ are broken down, providing greater access to members of the community who were previously disengaged. Peer Researchers are able to use existing mutual trust and relationships to connect with individuals as a result. More importantly, Peer Researchers are able to bring their own knowledge and lived experience to the role, which means new perspectives with the added benefit of their lived experience, which reduces ‘’risk of misunderstanding between researcher and respondents’’. Participants are therefore more likely to not only get involved with the research project but also ‘’respond more honestly and more openly’’ with an interviewer resulting in better quality of work (Young Foundation, 2020).

Peer Research: The CARMHA Project example

The CARMHA project is one such project that has trained and uses Peer Researchers to lead all aspects of the project with support from an academic research team. Many of the peers who undertook the peer research training have stated that they’ve “enjoyed the peer research work” and that they have “learnt more as a result”. One Peer Researcher has stated that it has been an “interesting journey for me as I have usually been on the other end of the stick”.

I’ve learnt more about myself, more about mental health and society in general, which has made me a better peer and a better researcher consequently – Cody, CARMHA Project Peer Researcher

The Peer Researchers in this project have been at the planning table since day one; developing the scope of the research, developing the research questions and co-analyzing the data and themes emerging from the project. Their unique insights from a place of lived experience has hugely benefited the study ensuring that assumptions and judgements in the analysis stage are mitigated.

Challenges in the role?

Both Adrian and Cody from the project, spoke about the minimal challenges they have faced in their role because of how connected they are to their community. However, they discussed the hardest parts of the role was learning about research ethics (such as aspects of confidentiality) and learning the “research lingo and putting research questions forward to participants in a way they would understand, but that also kept the integrity of the question itself.” However, peers stated: “the rest went smoothly as me and my fellow researchers are so connected in with the community that it wasn’t hard to connect with them.”

Other challenges that can emerge are building connections with peers with whom they don’t have any shared interests or exact experiences with. However, the team have overcome this by connecting instead ‘over shared values such as frustration at the system, and the prospect of hope’. Alternatively, working as a team allows for bringing in another peer who may be able to better relate with the participant’s life experience.

What has helped the peer research team flourish?

A Peer Researcher with several years’ experience in harm reduction realised that “the more open minded [they were], the less judgement [they had] about people, including those who use drugs.” Many of the Peer Researchers went as far to say that academic research teams are lacking if they don’t include peer researchers:

I don’t believe an academic researcher is beneficial for our community [those using substances], as they won’t get same results as us Peer Researchers with lived experience: we have a relationship with the individuals, and we’re able to get the best results for research that is needed. – CARMHA Project Peer Researcher

Peer Researchers on the CARMHA project also discussed how they used their insider knowledge of the community to source participants: ‘’the rest went smoothly as me and my fellow researchers knew all the hotspots in the downtown region which helped massively’’. Peer Supporter turned Peer Researcher, Theresa, from AAWEAR mentioned how her ‘’lived experience allows (her) to develop deeper connections with the individuals who use drugs which plays a massive factor in determining the successful outcomes’’, or ‘’results they get in their research’’. Peers invited to speak on the webinar ‘Can’t Engage, Won’t Engage’ explained how their lived experience has proven to be an advantage in reaching out to disconnected communities. Claire, a peer worker from the UK, believes that, because of her personal experience, she is able to “share her story and identify common interests unlike academic researchers”, and let participants know they are “understood”. However, she also notes that sustained engagement requires some level of consistency, something that comes naturally when connecting in peer work. She also states that in order to ensure the process goes smoothly, ‘balance and checking in with personal intentions and boundaries developed over time’ are key to success.

One Peer Researcher sums up their experience on The CARMHA Project so far:

I personally didn’t use Cannabis to help my own mental health as I’ve chosen other methods, however the process has shown how I can help others by sharing my own experiences with my mental health, and what I do to help with my own mental health issues with them. It even opened up my eyes to my own mental health and addiction and even allowing me to appreciate all different parts of society. It has made me a better researcher and I hope this continues this way as this is only the start – CARMHA Project Peer Researcher

Peer observations vs Researcher observations: Impact on Research

From an academic researcher perspective, the benefits of using this approach is clear:

When done well, peer participation in research has deepened it ability to connect with the community, strengthened our understanding of experiences and the context, resulting in better quality research.

Jorgensen et al. (2017) indicates that peer researchers, due to lived experience, add unique perspectives to the research process. They also have the ability to locate hard to reach populations and foster an interview environment that is more open, relaxed and honest for participants than what academic researchers could achieve.

However, how we involve peers and the underlying aim of their involvement has real ethical consequences. Peer participation should reach out beyond ‘rubber stamping’ or mere consultation. Peer research is most effective where peers are gaining powerful roles in the development of knowledge. But how and where peers are involved is often determined and guided through academic institutions, research ethics boards, and funding bodies – powerful institutions where peers often have little power.

Something unique to peer research within the CARMHA project is that peer research is paired with peer support. This has allowed peer researchers to not only provide surveys, but know when to provide empathy, support and resource referrals during survey conversations.

Combining academic, peer research and peer support into a project, should be viewed as a more holistic approach to research, one which increases the validity of data and findings while also placing additional focus on the well-being of the participants.

Conclusion

Peer research helps to reduce the barriers between researcher and ‘participant’, allowing the peer researcher to disclose their own experience where they feel it is appropriate, as well as being able to better connect with their communities.

Research directly involving participants, and in particular individuals from hard-to-reach communities, greatly benefit from peer-led research including having the ability to share similar experiences and build common connections based on shared feelings and interests.

If you’re interested in finding out more about the CARMHA Project and the impact of peer-led research you can click here to go to the CARMHA project website.

*Community-based research involves the community in all stages of a research process – this kind of research can give people the power to change their lives.

Additional References:

Devotta, K., Woodhall-Melnik, J., Pedersen, C., Wendaferew, A., Dowbor, T. P., Guilcher, S. JT., Hamilton-Wright, S., Ferentzy, P., Hwang, S. W., & Matheson, F. I. (2016). Enriching qualitative research by engaging peer interviewers: A case study. Qualitative Research, 16(6), 661-680.

Jorgensen, C. R., Eskildsen, N. B., Thomsen, T. G., Nielsen, I. D., & Johnsen, A. T. (2017). The impact of using peer interviewers in a study of patient empowerment amongst people in cancer follow-up. Health Expectations, 21, 620-627.

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