Around three quarters of health and social care studies are involving patients and the public in their research according to our latest analysis of data.
A sample analysis from the nearly 4,000 studies which received a favourable opinion from a Research Ethics Committee (REC) in 2023, showed that overall 74% of studies told us that they had involved patients and the public in their research.
This approach to public involvement is not consistent across all types of research though.
We looked at whether rates changed when research was a clinical trial and whether the sponsor was commercial or non-commercial.
Just over half (54%) of clinical trials and 53% of commercially sponsored research reported public involvement.
The figures were significantly higher for non-clinical trials (83%) and non-commercially sponsored research at 89%.
Throughout our analysis there were great examples of meaningful public involvement where the difference being made was clearly demonstrated.
However, not all applications provided clear information that would help Research Ethics Committees to understand how people’s input is helping to make the study ethically acceptable.
In addition. there were some applications where public involvement was confused with participation in research or dissemination of research findings.
Public involvement is expected and possible
Public involvement has long been an expectation of a favourable opinion from a Research Ethics Committee.
It is outlined as a requirement in Participant Information Design and Review Principles, and a wide range of resources are available to support good public involvement, including our checklist for applicants.
Making it easier to understand what good public involvement looks like, and the wide range of benefits it brings, is a priority for the HRA.
In 2023 as part of a joint consultation with the Medicines and Healthcare products Regulatory Agency we asked for views on introducing legislative requirements for patient and public involvement in trials.
Responses to the consultation demonstrated strong support for involving people.
The new Clinical Trials legislation was laid before parliament at the end of 2024. Whilst public involvement will not be a legal requirement under this legislation, the government were clear in their support for this.
To accompany the updated regulations, we are producing guidance and best practice for researchers which is based on the feedback we received in the consultation.
Establishing a baseline
The data in our report will be used to create a baseline to measure the impact of sector-wide efforts to improve the extent and quality of public involvement in health and social care research.
We will be monitoring applications on an annual basis and reporting on progress, with work already underway to analyse applications which received a favourable opinion from RECs in 2024.
Naho Yamazaki, Deputy Director of Policy and Partnerships, Health Research Authority,"This report is an encouraging look back at public involvement in health and social care research in 2023.
"There are some really positive examples of good public involvement taking place across the UK, but there is work to be done, particularly in clinical trials and commercially sponsored research.
“We also know that not all involvement is high quality, even if applicants have said that they’ve done it. Public involvement isn’t a tick box activity, it is a vital step in high quality research.
“The new guidance we are publishing alongside the updated Clinical Trials regulations will help to ensure there is good public involvement.
“As part of the Shared Commitment to Public Involvement we will continue to champion meaningful involvement and this data will help us measure the impact of our collective efforts to increase public involvement across all aspects of health and social care research.”
Full report
View the full Public Involvement Data Analysis Report 2023.