At McPin one of the ways we embed lived experience involvement in research is peer research – but what does it actually mean? The first in our blog series explores what it is, why we use it, and why it’s so valuable.
If you’ve been on the internet in the last five to ten years – particularly if you’re interested in mental health – there’s a good chance you’ve heard the term ‘lived experience’.
However, unless you’re in research spaces, you may not be familiar with its lesser-known cousin, ‘peer research’.
Over the last few decades there’s been a move in mental health research in the UK recognising that, for research to be engaging and impactful, it must be done in collaboration with those directly affected by the issues being explored – in other words, people with lived experience.
At McPin, we know lived experience expertise is more than a ‘nice to have’ on your project. In more recent years we’re also seeing commissioners, grant awarding bodies and government policy makers wanting to see insights from lived experience included in mental health research in a range of different ways.
One approach we take to embedding lived experience in research is peer research. So, what does it actually mean?
What is peer research?
Peer research is built on expertise generated when researchers bring both relevant ‘lived’ and ‘learned’ experience, knowledge and skills to their work – it acknowledges that researchers can have lived experience, and that this experience brings an important lens to research. We call this work peer research, but there are other related terms and fields such as lived experience research, service user-led research, survivor research and Mad studies.
At McPin, this usually relates to mental health lived experiences, including service use, diagnosis, treatments, and strategies for manging everyday life, but could also include other relevant experiences from care-giving to activism, age, sexuality, gender and ethnicity, and lots more.
Peer research is driven by social and epistemic justice. It acknowledges the inherent value of living with mental health issues, and the wide-ranging perspectives and knowledge it brings to light.
It recognises that for much of history such perspectives have been excluded from mental health research, treatment and practice. Peer research is an evolution of emancipatory research practices committed to redressing these injustices.
We view peer research as an approach that is not tied to a specific theoretical lens and is flexible with regards to method.
It’s often linked with creative and qualitative methods as it lends itself to building relationships with research participants, as well as exploring systems and context that can be aided by first-hand knowledge of the topic under investigation. However, the scope for using peer research is broader, including within clinical trials.
If you want to go deeper our 10 for 10 (10 resources to celebrate 10 years of McPin) peer research resource explores this – and other elements of peer research – in more depth. The accompanying ‘Ode to peer research’ video brings it to life with stunning animations.
Peer research, co-research and lived experience
Let’s discuss terminology, as there can be lots of different terms used around lived experience work, often interchangeably.
Although it can vary from place to place and person to person, this is a very quick overview of how we at McPin define some of the different terms:
- Peer research: A research approach where researchers draw on both relevant ‘lived’ and ‘learned’ experience, knowledge and skills in their work. This could be anything from designing a study, collecting data, or analysing, writing up and disseminating findings. It’s often matched to a work opportunity in a research study because of the experiences and skills peer researchers bring.
- Co-research: We adopt this model with young people aged 16-25 working in a trainee researcher capacity on youth-focused projects. They will often have relevant mental health lived experience of the topic being researched. We pair them with an experienced researcher to gain on the job experience. Read more in our 10 for 10 co-research resource.
- Lived experience: Personal experiences, which are different to what you might get through work or training.
Why does McPin use a peer research approach?
As an organisation, we’re often a bridge connecting lived experience expertise with academic and clinical institutions. This can be complicated, as institutions working across the field of mental health have historically often seen lived experience as biased, unscientific or anecdotal.
To help change this we work with academics to partner with people with lived experience and peer research in their work, and to see its value.
I was able to act as a bridge between the wider study team and the Lived Experience Advisory Panel, of which I had previously been a member.
A service user on the PARTNERS2 study
The value of peer research
Here are a few examples of peer research in action.
A service user on the PARTNERS2 trial talked about the value of their role in the study:
“As a peer researcher with a diagnosis of bipolar, I was able to bring my own lived experience perspective to the study in several ways. I was able to act as a bridge between the wider study team and the Lived Experience Advisory Panel, of which I had previously been a member.
“When meeting potential participants for the trial, I was open about my diagnosis and emphasised how important and valued the input of lived experience was at all levels of the study.”
McPin Senior Peer Research Project Coordinator Zhuo Li shared how co-research has helped shaped our project Bridging Divides:
“Co-researchers have been involved in Bridging Divides from the beginning, and across pretty much every part of the project. They have helped shape the study design, taken part in data collection, co-interviewed participants with the research team, and come with us into schools to support data collection there.
“We have also worked together on analysing the qualitative data, had lots of team discussions around how we define sexism (an ongoing discussion!), and worked collaboratively on a government report submission.
“Their involvement has not just been an add-on to the research, but part of how the project has developed and how we have made milestone decisions along the way. Co-researchers can bring different perspectives to the data and challenge assumptions that academic researchers may not always recognise.”
Take a look at some blogs from team members and guest contributors sharing their perspectives on the topic:
Over the coming weeks we’ll dive deeper into the topic, with our next blog looking at peer researcher skills.
