Our research aims to improve the health and wellbeing of women and families by identifying who has additional needs, and by improving the healthcare management, support and clinical monitoring of women at risk of severe morbidity and mortality during and after pregnancy. Community involvement in the research really helps us to get this right.
Theme lead: Jane Sandall CBE, professor of social science and women's health, King's College London
Aims of PPIE in the maternity and perinatal health theme
Our goal is to create:
- a culture of active patient and public involvement and engagement (PPIE) in maternity and perinatal mental health research, where research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them,
- in which strong links and networks are developed with individuals and organisations to ensure that Black, Asian and minority ethnic communities are at the centre of the research, and
- that those living in poverty, facing disadvantage and with socially complex lives are well represented and supported to be involved in research.
PPIE strategy group
The maternity and perinatal mental health theme has a PPIE Strategy Group made up of: researchers, representatives of ‘the public’ (a combination of community members, maternity and perinatal mental health service users, and those with lived experience of pregnancy, labour and birth, postnatal care and parenthood), and two PPIE leads. As our Terms of Reference show, the PPIE Strategy Group's purpose is to:
- advise on ways of working towards our goal, for example by co-producing agreed values and good practice for collaborative, partnership working;
- promote diversity and inclusion in research, among researchers, research participants and stakeholder advisers;
- model good practice and to share, promote and occasionally provide guidance on PPIE matters, from the design and funding application stages to analysis, writing up and sharing of research findings;
- identify suitable training on PPIE and co-production collaborating with ARC South London colleagues, with other ARCs and organisations leading on PPIE, and to look for sources of funding for PPIE training.
Putting strategy into action
- We have a developed and we maintain an ethnically diverse PPIE Network with Black, Asian, minority ethnic and White members, our ‘PPIE advisers’, We recruit from community groups, social enterprises, charities, maternity voices partnerships and social media.
- Our PPIE Advisory Group meets at least three times a year to contribute to research proposals, information for the public, the look and feel of study materials, barriers and facilitators in how to build trust and establish positive relationships with key community groups.
- We pay our PPIE advisors an honorarium, as well as any out-of-pocket expenses, for leading PPIE work and giving advice at meetings.
- We monitor and report on the diversity of our PPIE advisors, with their permission, using the ARC-South London diversity monitoring form.
- We support and encourage opportunities for community members to lead training, to co-write articles and blogs, to train and work as peer researchers, to explore with researchers what is required for co-production to be possible, to know about and have opportunities to move into academic research and PPIE leadership.
- We have a paid PPIE lead with expertise on PPIE in research to advise and coordinate.
- We liaise and share good practice with the ARC Diversity and Inclusion group, other ARCs with PPIE expertise, the Institute for Women’s and Children’s Health and its Patients, Parents and Public Involvement and Engagement Committee and Research Committee, the King's College London Service User Research Enterprise (SURE), NHS Long term Plan/ Maternity Transformation Stakeholder Council, a range of relevant charities and maternity voices partnerships.
- We communicate openly, e.g. sharing research opportunities and findings using blogs, Twitter @arc_S_Lppi and Facebook. This year we are looking into good practice on giving feedback to PPIE contributors on how their suggestions have made a difference to research.
Service user-led training on involving diverse communities
In April 2021, the PPIE group for the maternity and perinatal mental health theme co-produced a training event to explore barriers, issues and solutions to community involvement in research. The training used participatory appraisal (PA) methodology (a family of approaches that enable local people to identify their own priorities and make their own decisions) and brought together researchers and community members. Our report shows how we worked and the actions that we recommend to overcome barriers, build trust and share power while doing research collaboratively.
PPIE is about empowering those very people who are at the heart of research in healthcare by giving them a voice.
Vita Moltedo, co-founder member of Maternity Voices Matter
I work on a cancer surgical ward, and as a strengthening communities parenting skills facilitator. I advocate for change for unheard voices in maternity services, and better care for cancer patients. My Motto is 'do not be afraid to challenge existing practice if you think it can be improved
Katherine Umutoni, Rwandese mother of three and member of Maternity Voices matter
Through building relationships with people and communities, we can then understand the questions and issues which are important to them. This means together we can design and carry out high-quality research which focusses on understanding and improving areas of health and care which matter most to women and families.
Zoe Vowles, researcher midwife
Our PPIE advisers
Our research is informed by service users and those with lived experience of maternity and perinatal mental health. Groups we involve include National Maternity Voices, various London-based maternity voices partnerships, Birth Companions, Tommy’s, Action on Pre-eclampsia (APEC), The Parenting Science Gang, Maternity Voices Matter, Maternal Mental Health Alliance, Prosperitys, FiveXMore, and Best Beginnings. We also connect with many individuals and social media networks.