Each year in November, the maternity and perinatal mental health theme at ARC South London meets online to consider public involvement in research strategically. We ask: “How is this work going? What needs to change to improve what we do?” The patient and public involvement and engagement (PPIE) strategy group is multidisciplinary, including community members, maternity voices partnership members, researchers, and policy and community engagement leads from relevant charities.
In 2022, the focus of the meeting was PPIE leadership: capacity building. Our research theme has a culture of this work being led by an experienced service user researcher, Mary Newburn, who has worked in maternity with parents’ charities for several decades in policy, information, service user research and PPI roles. This is not a universal approach. The NIHR says that the role of PPI lead (note: in this article we focus on patient and public involvement ‘PPI’ in planning and carrying out research, rather than ‘PPIE’, which includes engaging with the public to share research findings) can be taken by:
‘any of the co-applicants within the research team (or a named member of the team), who has the relevant skills, experience and authority to be accountable, represent, manage and embed patient and public involvement in all aspects of the research study/programme’.
Part of the PPI lead role is to ensure that there is a plan for PPI, and that activities necessary to achieve PPI goals are fully costed and included in the budget. This includes the PPI lead’s own involvement. The PPI lead can be an employed staff member, a sub-contracted charity, or a self-employed individual or representative of a registered social enterprise. All options, except being an employee, will require the university to approve the PPI lead as an independent ‘supplier’.
ARC South London has developed an involvement strategy, which aims to increase equity, diversity and inclusion (EDI) across involvement in the ARC. In terms of capacity building for PPI, this may have a number of implications, including identifying:
The need to build capacity around PPI leadership was illustrated to Mary recently, when she was contacted by a new PPI lead. This new lead had previously been a participant in a study and attended meetings with other service users. She had now been invited to be a co-applicant in a study, as the lead for patient and public involvement in the research. Priyanka (not her real name) said: “I’m making it up as I go along. I need some help”.
As a recent service user, Priyanka had gone to considerable lengths to become well informed about her options as a pregnant woman, and the implications of different care pathways, and she was well placed to draw on her own experiences. She had had some time to reflect. She had been pro-active about contacting and connecting with other women with similar interests and had set up a peer-support group. But she was new to the process of facilitating involvement in research. She wanted some help on what to do, what not to do, and how to go about it
In our PPIE strategy group meeting, we invited four external contributors to share their work and reflect on building capacity for PPI leadership. Associate Professor Rachel Rowe works at the National Perinatal Research Unit at the University of Oxford, in collaboration with Rachel Plachcinski, an experienced PPIE Lead. Rachel Rowe introduced a new study that she has set up for which she is the PPI Lead, alongside two PPI co-investigators who are new to the role.
As PPI lead, Rachel Rowe has overall strategic responsibility for PPI, including budgeting and planning. In the budget, she built in funding for PPI mentoring from Rachel Plachcinski for the two PPI co-investigators. Both Rachels see this kind of mentoring as essential in enabling a more diverse range of people to become involved in research with the learning opportunities, support, and guidance they are likely to need, from a researcher with extensive PPIE experience and an experienced service user mentor.
In March 2019, NHS England and National Maternity Voices collaborated to deliver mentoring training to Maternity Voices Partnership leads. Both Rachel P and Mary attended and since then have practised as mentors in service user involvement. The Coaching Manual by Julia Starr, recommended as a key training resource, describes mentoring as building rapport, listening, questioning, reflecting back, and goal setting within a context of emotional intelligence.
Rachel Plachcinski described how community members who have considerable experience of PPI in research (usually called ‘service users’, though they may not have used services for a number of years) are different from community members and recent service users without prior knowledge of research studies or PPI leadership experience. Rachel said that an effective and enabling service user PPI lead needs to develop a set of skills and knowledge, including how to listen, how to engage diverse groups within the relevant demographic, how to facilitate and reflect a range of experiences, and how to take the role – assertively, when necessary – as a ‘critical friend’ to researchers. Rachel and the wider group reflected on the support and opportunities people need to develop these competencies, self-awareness and confidence. The group felt that an external support network, and mentorship from an experienced PPIE lead, would both be helpful. Rachel said that she felt a national network for service users and the public involved in maternity and perinatal mental health research would be useful for sharing ideas, practical solutions and good practice.
After this presentation, Rachael Buabeng spoke about her motivation as a Black woman to collaborate with researchers, describing how personal pain can be turned into a sense of purpose to improve care and experiences for other pregnant women and families. Her key message was that Black women’s participation in PPI is essential to ensuring that Black women’s experiences are captured in research. She said: “This matters for my community, as we need to create formal knowledge of diverse lived experiences. My motivation is that this will inform change to improve the quality of care and support for families. Engaging with my community requires building of trusting reciprocal relationships, where we get our priorities and needs heard – and met – as well as researchers getting answers to their questions."
As a community leader, I can help to bridge the cultural and language gaps between Black women and many researchers. Removing barriers to participation for my community, and helping researchers understand such barriers, motivates me to be the part of the change we want to see in research
Rachael added that involvement in the research process through PPI work had “ignited a passion for me to develop my own skills in research”. So, as part of capacity building there must be opportunities for individuals contributing from a service user perspective to gain personal growth, and to use their insights and cultural knowledge. Opportunities to speak at events, to write and be published, and to learn new skills, can all be highly motivating and rewarding.
After this Jo Dagustun, a volunteer with the charity AIMS, which campaigns for improvements in maternity services, reflected on her journey into PPI in research, having already completed a PhD from a service user perspective. Jo’s maternity activism background, and civil service training and skills helped her with processes of consultation and feedback in a formalised way, but she finds PPI in research raises new questions. She feels that there is a steep learning curve for new service user PPI leads and unmet support needs are common, including the need for peer support and mentoring.
Sarah Fisher, a service user researcher, also attended the PPIE strategy group meeting. She proposed a buddy scheme as a way to help new, less experienced, public contributors to research to get involved – particularly in online involvement group events, which can be intimidating for new people with less experience. She said: “Pairing a new member up with someone who has been involved for a while, for a chat before and after their first meeting, could be useful, as well as informal catch ups, checking-in and general support. Perhaps if the buddy gets to know them and their experience, they could introduce them and help to bring them into the conversation at meetings. It might work best if new members are hooked up with someone they share a common interest with.” There needs to be continuous recruitment of new individuals and communities at all levels of involvement, maintained through respectful listening, investment and ongoing connection.
Zoe Vowles, a midwife researcher, reflected that researchers also need access to training, support and mentorship to be able to reach out and involve a diverse range of service users, community members and charities in positive ways, avoiding pitfalls and connecting with community expertise and established social media networks.
There is sometimes an assumption that researchers know how to involve service users and the public; when in reality there is a distinct set of skills required to engage with communities and reach out to diverse groups of people. This needs to be factored into the training and development of early career researchers just like learning about different research methodologies and other skills
Zoe added: "Working alongside Mary and building relationships with the members of the PPIE network has given me so many opportunities for learning and reflection, which can’t be found in a training course.”
In the ARC’s maternity and perinatal mental health theme, we have found that having an annual PPIE strategy meeting, makes space for further learning and planning. Each year, we agree a theme for the meeting based on articles or issues that have come up during the year, and invite external speakers. We involve community members/PPI contributors, researchers, and those leading PPI in research within our theme and from other themes, ARCs and universities. We have been able to incorporate the learning into our public involvement work. One example is adopting a ‘feedback from researchers’ form developed by partners at ARC East of England. We have developed a greater understanding of what motivates the public to collaborate with researchers, and the need to support individuals in their personal and professional development in ways that are important to them.
Our research theme, and maternity researchers in other places, have led the way in enabling community members and service user researchers to take up the role of PPI lead and co-investigator. For this to continue, and to increase the diversity of those involved, empowering the voices and views of service users, and meeting the demand from research teams, there must be investment in building capacity among service users and community members who, first, may wish to be involved in research and later, through experience, may grow into leading PPI. Researchers also need to learn about more equitable, respectful and inclusive ways of working.
Further research and development projects are needed, including provision of peer buddying, mentorship, and access to regional or national networks for rapid and rich learning opportunities and support. In keeping with our PPIE development work to date, we emphasise the need to develop reciprocal benefits for research projects, communities and service users involved. PPI activities must be planned creatively and costed comprehensively, with funding for necessary community relationship building, facilitation, leadership, administration and development work throughout. Careful attention must be paid to funding services users for their time during the bid writing, peer review and set-up phases of a project, as well as for their time once a project has officially started.