Diversifying Patient & Public Involvement - showcase of SPCR funded projects

Diversifying patient and public involvement (PPI) is a conversation that has been going on within the involvement community for many years, at least for as long as I’ve been working in this field. You often see people with a similar demographic (white, highly-educated, retired and often female) who become public contributors. Though that doesn’t make their contributions less valuable, there is a danger that by not including feedback from people with varied backgrounds, the PPI is less relevant as it will miss out on a breath of lived experience.

Over the last two years, the NIHR School for Primary Care Research (SPCR) has funded several projects that look into how researchers and involvement professionals can diversify the people they involve in research. Additionally, SPCR partners have received flexible funding to invest in initiatives to strengthen their PPI, which many have spent on exploring ways to diversify the public contributors they work with. These are ongoing projects, as building relationships are essential to them, and all look at diversifying the people they work with from different angles and with different audiences in mind. 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 ground work in making it happen, despite the ongoing coronavirus pandemic.

Due to the relevance of these projects, the SPCR was keen to give them a well-attended stage. On the 11^th of March, four SPCR funded projects presented their work so far to their fellow PPI leads within the SPCR and involvement professionals from various NIHR organisations, charities, universities, NHS trusts and social enterprises. It’s one of the benefits of our online world that it is now easier to share and discuss learnings with a wider audience.

The first presenter was Sonia Newman, who is the SPCR PPI lead for the University of Southampton. She started early 2020, supported by colleagues in the Wessex PIN in particular Katherine Baker and Michael Bahrami-Hessari and building on their reaching out project, to test and develop models of engagement with underrepresented family groups in primary care research. They were working together with a local sure start centre, located in a council estate in a disadvantaged area, to reach out to families and carers of small children. They planned to have activities with the families and start conversations about health and health decision making and management for children. But also about their understanding of research and why they would or wouldn’t want to be involved. The sure start team were keen to work with Sonia, Katherine and Michael. They started to work with the team and build a partnership where they showed that they didn’t just want to take but also give to the community, but then coronavirus hit and they had to reimagine their plans and were pushed to think more creatively in different ways.

In between lockdowns they managed to support some ad-hoc activities, like story-telling and a scavenger hunt, to meet families and get a presence with the families and sure start team. They wore recognisable t-shirts that asked people if they could help finding answers, to avoid the usage of words like research and involvement to be more accessible. After that they moved online and were invited into the sure start Facebook group, where they are now still building on their relationship by posting short videos that trigger responses from people. More information on the project so far can be read in their latest blog.

Next up was Isabel Adeyemi, who is the SPCR PPI lead at the University of Manchester and works closely with their PPI group PRIMER. PRIMER identified they currently have an underrepresentation of people who are of working age and in employment. As such they wanted to build relationships with businesses to see if they might be willing to inform their staff about PPI opportunities and potentially allow employees to join involvement meetings during working hours, a school governor-like system. They reached out to companies who are already affiliated with the University of Manchester and organised a workshop with representatives from 5 businesses. The businesses attending varied from small local organisations to branches of (inter)national businesses. During the workshop they provided information, presented by researchers and public contributors, on what PPI is and how businesses can be involved. Benefits they saw for businesses included corporate social responsibility, employer benefit, support employees’ understanding of healthcare and improve their relationship with the University of Manchester. More information on the workshop can be read in a blog from PRIMER.

They learned that though some businesses are willing to forward involvement opportunities to their staff, they weren’t keen on freeing up employers’ time to allow them to be involved in research. Another learning was that there is a need for virtual meetings to be more accessible for people who are employed and the group will have a discussion whether they want their meetings to continue virtually, back to in person or maybe a hybrid. It also became clear that outside academia PPI and its value is not well understood. As such, Isabel is currently working with PRIMER members on developing video material on what PPI is and its benefits, to help people visualise how PPI works to make a stronger case to businesses in future discussions. Conversations with some potential partners are still going on.

The third speaker was Dr Susan Moloney, SPCR PPI lead based at Newcastle University. In partnership with local research infrastructure colleagues and regional voluntary community and social enterprise (VCSE) organisations, the study team has been looking into the feasibility of commissioning PPI with the VCSE sector as a way to sustain diversity in PPI and to enable inclusivity of under-represented groups. The idea is for VCSE organisations to undertake involvement and engagement activities with the marginalised groups they serve on behalf of the research community for a fee. VCSE organisations are familiar with commissioning, but PPI would require more co-development than usual due to the complexities around the process of doing involvement. VCSE partners were identified with the help of a regional network organisation for such organisations. Working with a network organisation helped the team to reach many diverse organisations who work with various communities and service user groups that are often unheard and some even never engaged with Newcastle University before. Many organisations showed interest and the team had to do a selection to identify the partners in this project.

Both research and VCSE partners were asked about the feasibility and sustainability of a commissioning process and how it could be supported within the current infrastructures. They started with a survey and are currently in the process of holding virtual co-production workshops based on the survey outcomes, which will be followed by an engagement and dissemination event. The VCSE partners received a fee for participating in the work, which is crucial to allow them to contribute, particularly so during the pandemic. Initial findings show insights into how to make the process transparent and fair so that any eligible organisation knows of it and can apply. But there are worries from both sides on the high workload these organisations already face. This leads to some concerns on how fast organisations can therefore execute PPI work. All parties need to have clear benefits and long-standing relationships need to be build. Another finding was that there is a need to strengthen the understanding and capability for both the research community and organisations to manage and deliver a commissioning process.

It was up to Dr Steven Blackburn, SPCR PPI lead at Keele University, to give the final presentation. He shared their progress so far on their work to engage with underserved communities to transform primary care services. They are working with a local organisation, British Ceramics Biannual, who have an active education programme where they engage with the wider public on the craft of ceramics. This project was initiated because of a pressing need to diversify the Keele Research User Group (PPI group). They decided to focus on people with South Asian heritage and the gypsy and traveller community. They had to start from scratch with this project and build up relationships, but felt they needed some help in engaging with different communities so they looked for community organisations to partner with. Though the initial aim of the project was inform a program of activities at Keele University to transform primary care practice, they quickly realised that actually wasn’t feasible as the goal of the project. The new aim was more about building relationships and bring people together using a creative activity and allow that to be a stepping stone for future partnerships.

There was a lot of email and phone conversations prior to the meeting to get to know the community organisations. The team found it difficult to access groups as a lot are closed due to the coronavirus pandemic, but they manage to find partners via word of mouth and connections of colleagues. And Google and cold calling helped as well. The team have established connections with a national gypsy and traveller organisation, but found it more difficult to get things started with the local gypsy and traveller communities. As such they mostly focussed on South Asian communities for now, with conversations still going on with the gypsy and travelling community. So far they had a first meeting with representatives of organisations, which included an organisation for refugees and asylum seekers and a dementia café organisation. During the meeting they learned that many people in the communities are digitally excluded. This meant that they had to come-up with an approach to have a ceramics activity without excluding those without digital access. The plan is to make ceramics plates to capture their experiences of health. There will be virtual meetings, but also instruction packs so people can do it in their own time at home. In the first session the plates will be made, and then the plates will be baked for them and a second session will take place where the plates can be decorated and the conversations about what is important to them with regards to health will take place. A third follow-up meeting will be about reflecting on the plates made. Those who can’t join via the video calling meetings can join via a private Whatsapp group and engage and share their findings there. Steven mentioned it has been a learning process to not be too task focussed with discussion topics and specific aims to benefit the research and do what’s needed for the project, but to focus more on creating a positive experience for people, join them in their activities and building the relationships.

Participants of the event found the presentations “inspiring”, "out-of-the-box approaches to diversify PPI” and “great example of how to properly engage and remove ‘them and us’”. All of the projects are still ongoing as relationships need the time to build and there will be future learnings to be shared from the work going on. Do keep an eye on the SPCR’s website and Twitter to stay informed.