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

Abstract

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. 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. 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. 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. 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. Not applicable. Patient and public involvement (PPI) means working with people who have real-life experience to help design and improve research. This is important because research should reflect the needs of the people it is trying to help. However, not everyone is included. Black women are often left out, even though they are more likely to have poorer experiences of healthcare, particularly during pregnancy. This study looks at how we involved Black women in a research project called PROMISE. This project was not just about health—it was about improving how research itself is done (this is called “methodology” research). This matters because if research is designed in the wrong way, it can exclude people before the study even begins. We worked closely with a group of Black women who had been pregnant. They helped shape the study from the start, helped us understand what the results really meant, and helped create guidance for researchers. Their ideas changed how we thought about the research and made sure it reflected real-life experiences. We learned that good involvement takes time, trust, and respect. It helps to work with trusted community groups, be flexible, and create safe spaces where people feel comfortable sharing their experiences. We show that involving Black women is important not only for better healthcare, but also for improving how research is designed and carried out. By including their voices in methodology research, we can make research fairer from the very beginning and ensure it works better for everyone.