British Heart Foundation (BHF) Data Science Center Public Advisory Group

Overview

Area(s) of interest:

Members of the BHF Data Science Centre Public Advisory Group have extensive knowledge in data research, in particular related to cardiovascular disease and circulatory conditions, such as stroke, diabetes and kidney disease. As well as being interested in these conditions, many members of the group are also interested in topics such as data linkage, health economics, ethics in data research and AI in data research.

Additional information

Location: UK

Mode of working: Hybrid

Hybrid

There is a mixed response from the group in preference to remote or in-person meetings. The group predominantly meets online as they are geographically spread across the UK (however most based in England) during office hours. However, some members of the group will be interested in in-person opportunities and out of office meeting times.

Research experience: Yes

Notes:

The BHF Data Science Centre has a Public Advisory Group made up of 28 public contributors who have lived experience of heart and circulatory related conditions or experience as a carer for someone living with a similar condition. Our public contributors have been involved in data research in a number of ways, including:

• Shaping research questions and reviewing research proposals

• Co-authorship of research papers

• Reviewing and writing lay summaries and other public-facing materials

• Influencing governance and strategies

• Supporting funding applications

• Supporting dissemination of materials, including writing blogs and website content.

Public contributors have also collaborated with the Data Science Centre to develop a PPIE service for cardiovascular data researchers which launched in September 2026. The service is an opportunity to provide bespoke PPIE support to the research community which is shaped and influenced by patients and the public.

Type of involvement:

Co-Production

Notes:

Important to note before engaging with the group (or organising meeting), in-depth knowledge of the proposed research project should be sent in advance including a plain English summary as well as clear instructions of what is being asked (and not being asked of the group) in terms of involvement.

Availability:

Expenses:

Please offer reimbursement to participants for their time.

Our comments to researchers:

Include public contributors as early as possible, ideally through the development of the research proposal
Be clear on timelines, expectations from public contributors and any possible constraints
Be as transparent with the public as possible at all stages of the research
Be clear where public contributors have decision making authority and where they have the possibility to influence research (also where there are limitations to decision making/influencing).