Zenab continues: “This journey has been filled with stimulating conversations and a humbling, broad latitude to dream about a more diverse and inclusive research community.
“Working with ARC South London has allowed me to collaborate with an inspiring group of individuals and helped to increase my confidence. It has opened opportunities for me to be involved in another research project at King's College: the Represent All Women Study.”
Rachael says: “I feel I have been able to share some of the views of the women I work with and engage some of my community contacts in research. In so doing, we are broadening involvement and creating a bridge between researchers and grassroots groups and the communities. There is a gap, and this needs to be acknowledged, articulated and understood. It has been rewarding to be a part of changing this.”
Vita says: “Since my first participatory appraisal project, I have attended various PPIE events run by ARC South London, first with the maternity and perinatal mental health theme, including planning and facilitating training on reaching diverse communities. In January, I joined the Covid-19 Public Research Panel chaired by Dr Ocloo, which has since become the ARC South London Public Research Panel, and I am a member of the ARC Involvement Advisory Group. I have progressed from being a member of the audience to sharing responsibility for leadership and organising.”
As a small group who have come together to reflect on how the last 18 months of working has unfolded for us, we generally feel positive. We feel that we can help to facilitate a process whereby researchers are more likely to tailor research designs and specific questions to ensure their research is ‘for’ – and sometimes ‘by’ – people experiencing social, cultural and economic disadvantage, and women of Black, Asian and minority ethnic heritage. However, this is made possible by those leaders and coordinators who work specifically from a community development, or involvement, perspective and these ‘soft’ skills are often overlooked and under acknowledged.
But we feel there is more work to be done, including improving feedback to those who provide advice from Black, Asian and minority ethnic community perspectives.
Online meetings can be convenient for home-based workers, mothers and other carers. It seems unlikely that we would have had so many talented and well-networked women able to find the time to join us regularly, if they had had to travel to King’s College London’s campus in Waterloo for meetings, adding perhaps two hours of travel time per meeting. Our PPIE Network members are all busy women with families, many managing jobs (paid or voluntary) and care of young children. Had we not had the meetings online, fewer would have attended and continuity in commitment would have been less. However, we are aware that online events, also exclude many people, such as those without the technology, time or the many other conditions that enable involvement, such as confidence, connections, social/language/technical support, trust in research and awareness of PPIE processes.
As well as continuing online advisory group meetings, we would like to see more opportunities for community-based involvement meetings and peer research. This will require additional funding: for the individuals taking part; for charities working with those experiencing deprivation and discrimination; and for intermediaries like us who, in our different ways, can help to make this possible.
We believe that insights into involvement-in-research experiences, emotional intelligence and cultural competency are important ingredients for better research and positive, reforming, policymaking. In fact, we feel these are key to ensuring a healthier, happier, less divided society.
Zenab Barry, Chair of Council at the National Maternity Voices, and Co-Chair Chelsea and Westminster Maternity Voices Partnership (MVP), a London NHS trust where continuity of carer is being provided and is part of an NIHR ARC South London research programme, and Service User Representative at the Chief Midwifery Officer's Research Strategic Advisory Board.
Rachael Buabeng, Multi-award-winning founder of Mummy’s Day Out, author, maternal health and Hyperemesis Gravidarum advocate (severe vomiting in pregnancy), and Co-chair of Homerton Black and Black-mixed heritage MVP.
Vita Moltedo, Participatory appraisal-trained peer researcher, mother, speaker of English as a second language, founder of Maternity Voices Matter network, member of the NIHR ARC South London Covid-19 Public Research Panel, now the Public Research Panel.
Mary Newburn, Patient and public involvement and engagement lead for the maternity and perinatal mental health research theme at NIHR ARC South London
ZB, RB and VM told their stories and shared reflections on PPIE in research and being part of the PPIE Network. MN posed the questions and wrote the first draft of the blog. We all contributed to the critical reflections, achievements and conclusion, and agreed the final version.