Patient and Public Involvement | PRiSMM

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The PRiSMM team includes a PPI co-investigator, Natalie Whyte who has been involved since the beginning of the programme. This project has been codesigned with participants who have lived experience of inequalities in maternity care, and of severe adverse outcomes in pregnancy. Every aspect of this study has been informed by our public and patient representatives and the wider experiences of women who contributed to group sessions, policy labs and some focussed sessions during the planning of this research. Participants from minority ethnic groups have been actively involved.

As part of our preparations to apply to use patient data without consent we have spoken with 16 women with diverse backgrounds and experiences of maternity care in England, to seek their thoughts and opinions on our research and the acceptability of using patient data without consent. The feedback provided by these women during small focus group sessions or individual conversations has been invaluable in helping to ensure that our research protocol and any materials provided to patients to inform them about the research, clearly addresses patient concerns and sets out the options for patients who do not want to have their health information included in this research. More information is available on our use of personal data page.

A Patient and Public Involvement and Engagement (PPIE) Advisory Group will be an integral part of this research, meeting face-to-face at least biannually with online meetings as needed to advise on key aspects of study design, patient information materials for the qualitative aspect of the study, topic guides for focus interview discussion, promotion and dissemination. The group will comprise up to 20 public members and we will work with the Pregnancy and Baby Charities Network (PBCN) to identify individuals with an interest in joining our PPIE Advisory Group.

Additionally, our Programme Steering Committee includes a PPIE representative, Ngawai Moss a dedicated women's health advocate whose passion for safer maternity care stems from her lived experiences as a woman with epilepsy during pregnancy.