Reflections on reflecting – how to promote diversity in patient and public involvement
Esther van Vliet, Patient and Public Involvement and Engagement Manager at the NIHR School for Primary Care Research (SPCR), writes about how colleagues are engaging under-represented communities and encouraging fresh voices in patient contribution.
How to diversify patient and public involvement (PPI) has been discussed within the research community for years. Often people with a similar demographic – white, highly educated, retired and often female – become public contributors. While their views are valuable, it is vital to have feedback from participants with varied backgrounds so PPI reflects the true breadth of lived experience.
Over the last two years, the NIHR School for Primary Care Research (SPCR) has funded several projects to pursue diversity among public contributors. In addition to a funding call supporting projects to diversify their PPI, SPCR partners have received flexible funding for initiatives to strengthen work in this area by exploring ways to diversify public contributors.
Sonia Newman, SPCR PPI lead for the University of Southampton, together with Katherine Baker and Michael Bahrami-Hessari (The Wessex Public Involvement Network), is leading a project to test and develop models of engagement with underrepresented family groups in primary care research.
Her team collaborated with a local Sure Start centre in a disadvantaged area to reach out to families and carers of small children. They planned activities with the families where they could discuss health and its impact on children, while also gauging their understanding of research and willingness to be involved.
Despite COVID-19, Sonia’s team supported activities between lockdowns to become familiar to the families and Sure Start staff. For example, they wore recognisable T-shirts that asked people if they could help with finding answers, and avoided using words like ‘research’ and ‘involvement’ to be more accessible. They also worked online and joined the Sure Start Facebook group, where they are building on their relationships and promoting engagement by posting short videos.
SPCR PPI lead at the University of Manchester, Isabel Adeyemi, works with PPI group Primary Care Research in Manchester Engagement Resource (PRIMER). Working adults are under-represented within PRIMER. To tackle this, the group was keen to develop relationships with businesses, inform their staff about PPI opportunities and allow employees to join involvement meetings during working hours.
PRIMER reached out to companies affiliated with the University of Manchester and arranged a workshop with five businesses, ranging from local organisations to international firms. During this Isabel’s team provided information on how businesses can be involved in PPI. Benefits included showcasing corporate social responsibility, supporting employees’ understanding of healthcare and improving relationships with the university.
The team learned that though some businesses are willing to promote involvement opportunities, they weren’t keen on freeing up time to allow their staff to be involved in research. PRIMER members are now developing video material on PPI's benefits to help make a stronger case to businesses in future discussions.
Laying the foundations
Dr Susan Moloney, SPCR PPI lead at Newcastle University, has been assessing the feasibility of commissioning PPI with the regional voluntary community and social enterprise (VCSE) sector to sustain diversity.
The idea is for VCSE organisations to undertake involvement and engagement activities with marginalised groups on behalf of the research community for a fee. With the help of a regional network, Susan’s team identified VCSE partners who work with communities and serve user groups who are often unheard.
The research and VCSE partners are assessing the feasibility and sustainability of a commissioning process. Initial discussions have identified ways to make the process transparent so that any eligible organisation can apply, but there are worries from both sides on the high workload VCSE organisations already face.
Dr Steven Blackburn, Keele University’s SPCR PPI lead, has worked to engage with underserved communities to transform primary care services. His team are working with British Ceramics Biennial, a local organisation that engages with and educates the public using pottery. The plan is to make ceramics to reflect local groups’ experiences of health.
This project was started due to the need to diversify the Keele Research User Group. Steven’s team decided to focus on people with South Asian heritage and the traveller community, linking with community organisations to help engagement. The pandemic made access difficult but the team found partners through word of mouth, colleagues’ connections, online searches and direct contact.
During a first meeting with different bodies, including a group for refugees and asylum seekers and a dementia café, Steven’s team learned that some people in the communities do not have internet access or a computer. This meant putting on creative pottery activities not solely reliant upon digital access.
Steven said the experience showed the importance of prioritising relationship building, rather than specific research aims, to create a positive experience for participants.
Making diversity happen
One of the things I really like about these projects is that they don’t just talk about the importance of diversifying, but are actually putting in the groundwork to make it happen, despite the ongoing coronavirus pandemic. They all look at different audiences and use different approaches to reach out to them.
When we talk about diversifying, it isn’t about including one more profile or demographic to tick the box, but about the whole range of protected characteristics. The SPCR supported the launch of these ongoing projects and I’m excited to see where they will lead in a few years’ time.
Esther van Vliet, is Patient and Public Involvement and Engagement Manager at the NIHR School for Primary Care Research (SPCR)
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.