Involving a black woman patient and public involvement group in maternal health methodology research: learning from the PROMISE Study.

BACKGROUND

Patient and public involvement (PPI) is at the centre of high-quality health research, but PPI representatives are often limited in terms of demographic diversity and are often absent from methodology research. In maternity research, this exclusion is consequential, as Black women experience significant healthcare inequities, are often excluded from research, and yet are rarely involved in shaping how research is designed and conducted.

AIM: To critically reflect with our PPI members on the development, processes, and impacts of PPI in the methodology study - PROMISE, which aimed to support Research Delivery Teams to engage Black women in discussions about opportunities to participate in maternal health research.

METHODS

PROMISE embedded PPI across the research lifecycle, including grant development, recruitment strategy design, data interpretation, and the co-design of outputs. A purposively recruited national PPI group of Black women with lived experience of pregnancy worked in partnership with researchers and a community engagement organisation. Together with PPI representatives, we drew upon the GRIPP2 long-form framework to articulate learning around conducting meaningful, inclusive PPI in maternal health and methodology research with Black women.

RESULTS

PPI shaped the study focus, challenged early assumptions about engagement, strengthened interpretation of qualitative findings, and helped co-design the main outputs of the PROMISE study, which included Principles of Engagement for supporting research delivery teams to engage Black women in maternity research. Through this reflective piece we co-developed lessons for conducting inclusive PPI with Black women, highlighting the importance of trust-building, cultural specificity, flexibility, emotional safety, and a recognition of the importance of interpreting findings through lived experience.

CONCLUSIONS

Conceptually, the study positions inclusive PPI with Black women as a methodological necessity that reshapes research design, interpretation, and implementation. Alongside our reflections supported by the GRIPP2 framework, we describe practical approaches to implementing inclusive PPI processes in methodology research.

TRIAL REGISTRATION: Not applicable.