Involving patients in our research

Involving people affected by heart and circulatory disease in our research is important to us – both because it can improve the quality of the research, and because it helps make sure that the research is addressing issues that patients feel are important to their treatment and care.

Listening to the patient voice when we fund clinical studies

Patient involvement is a key part of the BHF’s organisational strategy to 2030. We have set up a Patient Advisory Group to help assess applications for clinical trials and studies.

Our Patient Advisory Group is made up of 15 members who assess research applications made to our Clinical Studies Committee. The purpose of this group is to ensure that people affected by heart or circulatory conditions can play a part in funding decisions made by the committee. The group members represent a broad range of heart and circulatory conditions, and where possible, each member will review applications for research that relates to their own condition.

The Patient Advisory Group discuss each application and reach a consensus view about the research, including how feasible they think the trial is likely to be from a patient viewpoint, the quality of patient and public involvement in the proposal, and whether the research addresses issues that are important to patients. Two members attend the Clinical Studies Committee meetings as lay members to represent the views of the group, and these views are also fed back to the researchers making the application. In this way, BHF ensures that clinical studies we support have been assessed and scrutinised by patients, and that researchers can benefit from the expertise provided by patients.

How patients help shape our work

In 2019 we recruited a global Patient and Public Panel to help assess applications to our landmark £30m Big Beat Challenge. The panel is made up of 12 people with heart and circulatory conditions from around the world. As part of the assessment process, panel members gave their views on whether the proposed projects had the potential to transform the prevention or treatment of heart and circulatory disease, and whether they were clearly relevant to patients.

Our policy and influencing work is also informed by people with experience of heart and circulatory disease. For example, five patient representatives had pivotal roles in 2019 contributing to “Putting patients at the heart of artificial intelligence”, a report by the All Party Parliamentary Group on Heart and Circulatory Diseases. More recently, two BHF patient representatives attended a workshop held by the National Institute for Health Research (NIHR) to give their perspective on a post-Covid vision for clinical trials in the UK. In addition, we convened a new panel specifically to provide patient involvement in Covid-19 flagship research projects which have been prioritised by the BHF and NIHR to understand more about the links between Covid-19 and cardiovascular health.

Patient involvement has also been at the heart of the BHF-funded Clinical Research Collaborative (CRC), which was established in 2019 to support the planning and delivery of high-quality clinical cardiovascular research across the UK. 

First published 16 June 2021