The aim of the workshop, attended by more than 30 ARC members, was to discuss how to engage with patients, service users, public and community contributors through peer-research methods – in which people with direct lived experience of the issue being studied help to shape and conduct the research.
Dr Josephine Ocloo, senior research fellow and lived experience researcher at King’s College London, opened the workshop, highlighting the wider social movement towards increased community engagement and participatory approaches in many areas of public life, including research.
Dr Ocloo noted the NIHR definition of public involvement as: research that is done 'with' or 'by' the public, not 'to', 'about' or 'for' them, meaning that patients or other people with relevant experience contribute to how research is designed, conducted and disseminated. However, she pointed out that patient and public involvement has frequently been criticised for being tokenistic and lacking in diversity and inclusivity and only involving members of the public in limited ways.
Dr Ocloo explained that peer-researcher models are becoming increasingly important as a way of addressing inequities in research and to make it more impactful by recruiting those with lived expertise of health conditions and services to join research teams and to be involved as researchers in all stages of the research process.
Their involvement in this way is intended to shift power in the knowledge production process to be more equitable and to enhance the quality of research by providing insight, knowledge and lived expertise
Reflecting on her own journey into peer research, Dr Ocloo said that she began her career in community activism in Tower Hamlets working with African and Caribbean, Bangladeshi and Somali communities. “One of the things that really hit me was that these groups were some of the most disadvantaged in terms of their health needs and yet were not being heard, and included in research and healthcare improvement” said Dr Ocloo, and that this has implications for understanding and addressing health inequalities.
She then shared her personal story of the death of her 17-year-old daughter due to medical negligence and racial discrimination, which led her to become a patient safety campaigner and health services researcher. “Bringing in my lived experience is important for me as a Black woman, because people from racialised minorities are more likely to report being in poor health and have poor experience with health services. And yet despite this, Black, Asian and minoritised groups are less likely to be involved in healthcare improvement and practice and research both as public members and healthcare researchers,” said Dr Ocloo.
The introduction was followed by a panel discussion, chaired by Dr Ocloo, with Amy Allard-Dunbar, a peer researcher specialising in patient and public involvement working with the NIHR Mental Health Implementation Network; Cassie Lovelock, a peer researcher in King’s College London’s Service User Research Enterprise and the ESRC Centre for Society and Mental Health; and Vita Moltedo, a peer researcher working with the ARC’s maternity and perinatal mental health theme (see bios below).
Amy: “I got involved during Covid. At the time, I was a youth worker supporting young Black people and people of colour in Scotland. I produced a short report highlighting the difficulties young people had in accessing education and their experiences of distance learning. From there, I produced more reports about their experiences, for example, with police during Covid. I then moved into sexual violence advocacy work. So, I’ve built up a lot of experience working with different communities, mainly the LGBT+ community, trans communities and survivors.”
Cassie: “I entered this space through academia, which is unusual. I was a carer for my sister for a long time. When I was a teenager, I took part in a study as a participant on the unmet needs of young carers. And from there, the researchers offered me a job on that study as a peer research assistant. I was then invited to do a PHD with the same researchers, which led to various roles in academia and beyond. At the moment, I have a position in NHS England, where I do a lot of peer research and peer policymaking. And in my current academic project, I'm looking into the intersections around poverty and mental health neurodivergence and the welfare system.”
Vita: “When I had my son, I went through trauma that was connected to my experience of birth, and even more so in the weeks and months that followed […] I became interested in talking to other people about it. […] It can be much more than your own individual experience. It can be a more communal experience. After some time, I got involved in a project as a peer researcher without realising that that's what I was going to be […] I was part of a group of people with experiences of maternity services invited to speak to people in the community, doing qualitative peer-led research about their experience of maternity care. That's how it all started.”
Below: Vita pictured (third from left) with other members of the ARC's maternity research team at the King's Engaged Research Awards
Amy spoke of the challenges of doing community-based research, including finding trustworthy and well-respected community members who can work with marginalised communities and understand their experiences. They also spoke of the financial and emotional toll of being involved in peer research, which can be time consuming, particularly for third-sector organisations, and raise sensitive personal experiences for individuals with lived experience. In this context, Amy suggested that the value of research outputs is often overstated, at the expense of the value of peer involvement.
I'd say there are a lot of the nuances that are missed when people don't necessarily have lived experience or don’t come from that background. They don't necessarily appreciate the layers that you're being asked to bring when you're coming to that [research] table as a peer researcher
Cassie spoke of the challenge of gaining respect for lived experience in research. “We are asking academics, policymakers and ministers to take people's word for things [but they] don't trust lived experience. For me, the biggest challenge is that parity of knowledge; how can we make lived experience as respected as any other type of knowledge?”. Cassie also spoke of common and unhelpful assumptions that all peer researchers will have the same lived experience around an issue.
For researchers, I think the main questions they should be asking are: Am I the right person to be doing this? How can I share it with the community? Am I asking questions worth asking?
Talking about her own experiences as a peer researcher with the ARC’s maternity and perinatal mental health team, Vita emphasised the value of mutual support from the team of peers as the most important motivator for continuing in the research. Against this, she highlighted the logistical challenges of maintaining peer involvement from the beginning throughout the project, including appropriate payment and juggling involvement with other responsibilities, such as caring and work.
How can we let people tell their own stories in their own way to achieve better health and care and actual social justice where people are not having worse outcomes because of the colour of their skin, because of their accent, because of their gender, because of their family background?
The discussion opened to other attendees. Several people highlighted the importance of valuing diverse lived expertise in research, with a need to build trust with communities and to overcome language barriers. Others highlighted the difficulties of working within existing research structures, which tend not to support the consistent engagement that is needed to build and maintain relationships with the public and communities, and which create hierarchical academic structures that perpetuate power imbalances between different types of researchers.
“There's a whole set of issues around power, around insiders-outsiders, and around the sort of emotional labour that peer research necessarily involves,” said Dr Stan Papoulias, patient and public involvement research theme lead, research fellow and user survivor researcher, member of Service User Research Enterprise (SURE), King’s College London.
During the discussion several actions were highlighted to support peer research, including: