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“I’m making it up as I go along!” Why we need to build capacity for community involvement and service user-led PPI in research

Why is it important to work on capacity building in the involvement of the public, communities, and service users in research? In this blog, Mary Newburn, Rachael Buabeng, Sarah Fisher and Zoe Vowles, all involved in the ARC’s maternity and perinatal mental health research, reflect on this question.

Thinking about involvement in research strategically

Each year in November, the maternity and perinatal mental health theme at ARC South London meets online to consider public involvement in research strategically, asking: “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.

The NIHR says that the role of PPI lead can be taken by any co-applicant or named team member with relevant skills, experience and authority to be accountable, represent, manage and embed patient and public involvement in all aspects of the research.

ARC South London has developed an involvement strategy which aims to increase equity, diversity and inclusion (EDI) across involvement. In terms of capacity building for PPI, this may have a number of implications, including identifying:

• How more diverse groups and communities would like to work with researchers
• What motivates individuals and community social media networks to become involved
• What support and training may be needed
• What help may be needed to develop a realistic budget for responsive, inclusive, enabling and reciprocal PPI activities

PPI leadership: capacity building

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.”

Priyanka (not her real name) — new PPI lead, service user

As a recent service user, Priyanka had gone to considerable lengths to become well informed about her options as a pregnant woman, and had been pro-active about connecting with other women with similar interests, setting up a peer-support group. But she was new to the process of facilitating involvement in research.

Mary reflected on the importance of experience and mentoring in enabling new PPI leads to grow into the role, and the need to ensure that diverse individuals with community knowledge can take this role forward confidently.

Mary Newburn — PPI lead, maternity and perinatal mental health theme, NIHR ARC South London

In the PPIE strategy group meeting, four external contributors were invited to share their work and reflect on building capacity for PPI leadership. Associate Professor Rachel Rowe (National Perinatal Research Unit, University of Oxford) introduced a new study in which she is the PPI lead alongside two PPI co-investigators who are new to the role. In the budget, she built in funding for PPI mentoring from Rachel Plachcinski, an experienced PPIE lead, for the two new 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.

Rachel Plachcinski described how an effective service user PPI lead needs to develop a set of skills and knowledge, including how to listen, how to engage diverse groups, how to facilitate and reflect a range of experiences, and how to take the role — assertively when necessary — as a ‘critical friend’ to researchers. The group felt that an external support network and mentorship from an experienced PPIE lead would both be helpful, and that 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.

Improving care and experiences through involvement

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:

“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 Buabeng — Black maternal health advocate, Founder of Mummy’s Day Out, involvement member, NIHR ARC South London

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.

How peer support and buddying could support involvement

Jo Dagustun, a volunteer with the charity AIMS, reflected on her journey into PPI in research, having already completed a PhD from a service user perspective. She finds PPI in research raises new questions and feels that there is a steep learning curve for new service user PPI leads, with unmet support needs — including the need for peer support and mentoring — being common.

Sarah Fisher, a service user researcher, proposed a buddy scheme as a way to help new, less experienced, public contributors to research get involved:

“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.”

Sarah Fisher — Service user researcher

There needs to be continuous recruitment of new individuals and communities at all levels of involvement, maintained through respectful listening, investment and ongoing connection.

Supporting researchers with involving diverse service users

“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 Vowles — Midwife researcher, NIHR ARC South London

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.”

Summary

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, involving community members, PPI contributors, researchers, and those leading PPI in research within our theme and from other themes, ARCs and universities.

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, there must be investment in building capacity among service users and community members who may wish to be involved in research and later, through experience, may grow into leading PPI.

About the authors

Mary Newburn PPI lead, maternity and perinatal mental health theme, NIHR ARC South London

Rachael Buabeng Black maternal health advocate, Founder of Mummy’s Day Out, involvement member, NIHR ARC South London

Zoe Vowles Midwife research assistant, maternity and perinatal mental health theme, NIHR ARC South London

Dr Abigail Easter Deputy lead, maternity and perinatal mental health theme, NIHR ARC South London

Find out more

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  Guidance for Researchers: Feedback — from NIHR ARC East of England (adapted and used by the ARC South London maternity theme)
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  Report: Involving diverse communities in research — maternity and perinatal mental health theme participatory appraisal report (2021)
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  ARC South London Involvement Strategy
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  Patient and public involvement in maternity and perinatal mental health at ARC South London

Original source: arc-sl.nihr.ac.uk — NIHR ARC South London legacy content archived May 2026.