At the BHF Data Science Centre, members of the public play a vital role in ensuring a fair and rigorous approval process for accessing data. Six public contributors make up the COVID-UK-IMPACT Approvals and Oversight Board, established to review research proposals aimed at exploring the interaction between Covid and other health conditions, including cardiovascular disease. We asked three members of the Board – John Walsh, Margaret Rogers, and Alan Keys – to tell us how it works.
How does the CVD-COVID-UK-IMPACT Approvals and Oversight Board work?
Alan Keys: As a member of the Board, we are involved in reviewing proposals related to Covid-19 and cardiovascular research. I have been involved in other, similar activities within Health Data Research UK, and was a public contributor to the COALESCE research project which studied vaccine uptake.
Margaret Rogers: I and fellow public contributors review proposals and meet to listen to researchers’ presentations about their planned work that requires using these data. Just part of our remit is to assess plans for public engagement and involvement and determining just how accessible their lay summaries are. We frequently offer advice for improving their lay summaries and at times we recommend ways for making their research more inclusive thereby increasing the potential benefit to patients. At the end of our meetings, we make recommendations to the rest of the Board as to whether data access should be granted.
What was it like being involved?
Alan Keys: It was a stimulating experience, especially seeing researchers solving the problems of bringing different systems together to produce coherent, valuable data.
John Walsh: When I joined the Centre in 2020 I had some doubts as to whether public involvement would be at all useful. I had many years of involvement with “PPI” in health research, policy and service delivery, and had seen ample evidence of it adding value; but data is so impersonal, and has its own independent existence, so how could ordinary people, even if they were patients, influence anything? But, three years in, it’s good to be able to say that public involvement works here, too. I have seen my fellow members of the public group altering the content, aims and methodology of research by talking to the project leaders.
Margaret Rogers: It can be difficult for data scientists and health data researchers to imagine what it looks like for members of the public to contribute to their work. I find it helpful to think about public involvement in three broad areas: as co-producers in any of stage of the research process; as members of governance structures and decision-making bodies; members of advisory groups. So it’s great seeing those three areas come to life, and being part of it from beginning to end.
Why does it matter?
Margaret Rogers: Involving patients and members of the public in health research creates more relevant and meaningful outcomes, but what many don’t think about is that most health data research is carried out without the knowledge, let alone explicit consent, of those people whose data are being used. So, I believe there is a moral imperative to involve us in this research and that public involvement is essential for demonstrating the necessary transparency and trustworthiness of those researchers who are using our personal data.
Alan Keys: With the scepticism around the use of NHS data, I believe it is important for lay people to experience first-hand the absolute security and integrity of these processes. The freedom, indeed encouragement, to draw one’s own conclusions from the data is also a vital part of reinforcing the value of the research.
How do you feel about your contribution?
Alan Keys: I have agreed to join another research project since, as an indication of my support. I see such research as a way to bring together NHS data in a way that has never been done before and drill down into fundamental, sometimes difficult questions.
Margaret Rogers: It’s been reassuring to see our input and feedback about genuine public involvement not only being taken on board, but extended and made sustainable. I think it’s wonderful that involving patients and members of the public has been embedded in the BHF Data Science Centre’s work since its inception, and I feel privileged to be play a part in it.
John Walsh: It is tremendously rewarding for us to think that maybe we have made things just a little bit better for future patients.
Our vision is to work with patients and the public to co-produce quality research that is relevant to patients affected by heart and circulatory disease. Click here to learn more, and find out how you can get involved.
Note: This article contains excerpts from John Walsh’s contribution to useMYdata’s newsletter, 8th February 2024.
