Meet our PPI (Patient and Public Involvement team)
I have lived with obesity for my whole life, frequently being told that I just need to try harder to lose weight but with little support available. It is exciting to see robust research looking at what interventions deliver results, especially for a condition that affects so many people, and it's a privilege to be a part of shaping that research.
Margaret, a former community development support worker, got involved in health and social care following a diagnosis of a rare illness, Wegener’s Granulomotosis. In 2019 she received an award from South London CRN for outstanding contribution to clinical research – Putting patients and carers first. More recently, she received an honorary degree from York St John. She currently holds many positions as a PPI representative. This includes several co-applicant roles, membership of Steering Committees and one position on a Data Monitoring Committee. She is passionate about Equality and Diversity, works as a volunteer with the homeless community which led to being a PPI representative on projects on mental health and the homeless.
I am a former Geography teacher and lecturer in Further Education with past and current voluntary experience with Women’s Aid, homeless young people and working with refugees supporting them to acquire English language skills and settling in to a new environment and homeland. I was not aware of the existence of PPIE groups or what the abbreviation stood for before my involvement with the BECOME research as I have not been involved in scientific research before. I thought PPIE was related to a financial issue but know now how important PPIE (Patient and Public Involvement and Engagement) is. Researchers and scientists do amazing work but lay people like me get the chance to see studies from the point of view of regular members of the public, make suggestions and understand how the research findings might impact people.
The BECOME research has been a huge learning curve for me partly as I was new to the role and partly as I had to learn new terms, lots of abbreviations, read a lot to understand the issues and get to grips with some challenging discussions. In spite of these concerns, the PPI members have always been incredibly well supported and encouraged by the researchers and enabled us to have more frequent and regular meetings amongst ourselves to be updated, to raise questions or seek clarification outwith the main researcher meetings, the contents of which can sometimes go over my head. Although initially daunted, I have stopped worrying about this and feel comfortable with the discussions in our smaller group knowing that we can always seek help or ask questions of our lead contacts.
Sandra a former solicitor and a trustee for a mental health charity embarked on her journey as a Patient and Public Involvement and Engagement (PPIE) Public Contributor following her own lived experiences of poor health. In 2016 Sandra became an Improvement Leader Fellow of CLAHRC (Collaborative Leadership in Applied Health Research and Care) now known as NIHR Applied Research Collaboration. She currently holds a portfolio of profiles as PPIE lay advisor and or representative for various health care research studies and quality improvement projects. Sandra is passionate about improvement within the health sector surrounding patient care. She strongly believes that although some of us may have the same diagnosis of an illness, our lived experiences of it will vary, based on who we are, including our ethnicity, gender, age, deprivation or privilege, and personality. These lived experiences are pivotal in the design of any health care services and research.
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This study/project is funded by the National Institute for Health Research Health Technology Assessment programme (NIHR129523). The views and opinions expressed are those of the authors and not necessarily reflect those of the Health Technology Assessment programme, the National Institute for Health Research, NHS or the Department of Health and Social Care.
