Patient & Public Involvement & Engagement
Research is strongest when developed in partnership with the people and communities it aims to benefit. PPIE was embedded at the heart of everything we did.
Research carried out with people, not to them
Patient and Public Involvement and Engagement (PPIE) was central to the Maternity & Perinatal Mental Health Theme. Women, families, peer researchers, community organisations and people with lived experience worked alongside researchers throughout the research process — helping to shape research questions, develop study materials, interpret findings and support the translation of research into practice.
Our approach recognised that research is strongest when developed in partnership with the people and communities it aims to benefit. By embedding PPIE across the research lifecycle, we ensured that research remained relevant, inclusive and responsive to the experiences and priorities of those most affected.
Five principles that shaped our PPIE practice
Our approach was founded on the principle that research should be carried out with, and where appropriate by, people with lived experience — rather than to, about or for them. Working under the leadership of Mary Newburn, Theme PPIE Lead, we developed an inclusive approach that promoted partnership, diversity and meaningful collaboration.
Embedding PPIE throughout the research lifecycle
From developing research priorities and funding applications through to study delivery, interpretation, dissemination and implementation.
Building long-term partnerships
Developing trusted relationships with women, families, community organisations and voluntary sector partners across South London.
Championing diversity and inclusion
Ensuring that people from diverse backgrounds and those whose voices are often underrepresented had real opportunities to contribute to research.
Supporting meaningful involvement
Recognising and valuing lived experience expertise through appropriate support, training and reimbursement for all PPIE contributors.
Sharing learning and good practice
Promoting collaborative approaches to involvement across research, healthcare and community networks at local and national level.
Led by expertise and shaped by lived experience
The Theme's PPIE strategy was led by Mary Newburn, Theme PPIE Lead, whose expertise and leadership helped establish an inclusive, collaborative approach that embedded meaningful involvement across the programme.
Through her work with researchers, public contributors and community partners, PPIE became a defining feature of the Maternity & Perinatal Mental Health Theme — from co-producing research proposals and study materials to peer research, Photovoice, public exhibitions and community events.
Alongside Mary, a team of peer researchers, PPIE advisors and community members worked alongside researchers to ensure that studies reflected the priorities, experiences and needs of women, babies and families.
Maternity & Perinatal Mental Health Theme
How involvement shaped our research
From co-producing research proposals to peer research, Photovoice, community events and knowledge exchange, PPIE took many forms across the Theme. These examples demonstrate how community involvement helped translate findings into practice.
MORE — Maternity Opportunities Research Engagement
A participatory Photovoice study co-produced with community mothers in Lewisham and Lambeth to explore and tackle inequalities in maternity care — with community voices at the centre of the research process.
Learn more
MUMS@RISC
Maternity experiences and perinatal outcomes of mothers separated from their babies due to social care proceedings — shaped by meaningful engagement with women, families and voluntary sector partners.
Learn more
Community Listening Events
Listening events held in partnership with LEAP, PACT, Mummy's Day Out and Maternity Voices Partnerships in Lambeth and Lewisham — bringing research priorities directly into the communities we serve.
Explore our PPIE work"PPIE is about empowering those very people who are at the heart of research in healthcare by giving them a voice."
"Through building relationships with people and communities, we can understand the questions and issues which are important to them."
The people who shaped our research
Our research was informed throughout by service users, community members and people with lived experience of maternity and perinatal mental health. We are grateful to everyone who contributed their time, expertise and experience.
Toyin Adeyinka
Chair, Lewisham Maternity Voices Partnership
Agnes Agyepong
Parent engagement, Best Beginnings & GSTT MVP Chair
Emily Ahmed
Service user & public engagement consultant
Rebecca Brione
PPIE advisor / researcher
Leah Bedward
Service user, survivor, abuela doula & ARC Public Research Panel
Zenab Barry
Chair of Council, National Maternity Voices
Sarah Fisher
Women's health & rights advocate
Neelam Heera
Founder, Cysters; addressing health inequalities in marginalised groups
Vita Moltedo
Co-founder, Maternity Voices Matter
Mary Newburn
PPIE Lead, Maternity & Perinatal Mental Health Theme
Katherine Umutoni
Member, Maternity Voices Matter
Zoe Vowles
Researcher midwife
Our PPIE work also draws on partnerships with National Maternity Voices, Birth Companions, Tommy's, Action on Pre-eclampsia (APEC), Maternity Voices Matter, Maternal Mental Health Alliance, FiveXMore, Best Beginnings and many other community organisations and networks across South London.
Co-produced outputs to share and inspire
The Theme's commitment to meaningful PPIE has led to a wide range of co-produced blogs, reports, publications, presentations and practical resources — documenting our approach, sharing learning and providing guidance for researchers and community organisations seeking to embed meaningful involvement in research.