Public involvement in health and social care research in the UK report 2023

Summary

The Health Research Authority’s (HRA) vision is for high quality health and social care research today that improve everyone’s health and wellbeing tomorrow.

Our strategy sets out a guiding principle to include, so that health and social care research is done with and for everyone. Key to this is meaningfully involving people in all stages of research and sharing its findings in order to earn people’s trust.

The HRA made a commitment in our 2022 – 2025 strategy to push for change to increase public involvement in research.

We analysed a sample of applications (398) that received a favourable opinion between January and December 2023 from Research Ethics Committees (REC) (3,949), to see what information was provided on public involvement.

Of the applications we analysed, 74% (296) told us that they had involved members of the public in their research.

We also found that:

• non-commercial studies were more likely to tell us that they have involved members of the public in their research than commercial studies
• clinical trials were less likely to tell us that they have involved members of the public in their research compared to non-clinical trials
• applicants are most likely to involve members of the public in the design of research than any other aspects

We plan to use the findings as a baseline from which we try to measure the impact of our collective efforts to improve the extent and quality of public involvement across the sector.

What we did

In 2023, 3,949 studies received REC favourable opinion, and we analysed approximately 10% (398) of these studies.

We looked at the percentage of applicants who stated that they had actively involved, or would involve patients, service users and their carers, or members of the public in their research.

This included identifying if there were any differences between commercial and non-commercial studies as well as clinical trials and non-clinical trial studies.

We also looked at which aspects of the research process applicants stated they had actively involved the public in.

Findings

Public involvement breakdown

This section is focused on the proportion of applications that told us that they involved the public in their studies. Of the total number of studies we analysed (398), 74% of applicants reported public involvement in their studies as shown in the table below.

Comparing public involvement in commercial and non-commercial studies

This section is focused on sponsor types, where we looked at the numbers and percentages of commercial and non-commercial sponsors who told us they had conducted public involvement in their applications.

Of the 398 applications we analysed, 165 were commercial studies and 233 were non-commercial studies. Of the 165 commercial studies, 88 reported public involvement (53%). Of the 233 non-commercial studies, 208 reported public involvement (89%) as shown in the table below.

Comparing public involvement in clinical trials and non-clinical trials

This section is focused on study types where we looked at the numbers and percentages of clinical trials and non-clinical trials where applicants said yes to public involvement.

Of the 398 applications we analysed, 114 were clinical trials and 284 were non-clinical trials. Of the 114 clinical trials, 61 reported public involvement (54%) Of the 284 non-clinical trials, 235 reported public involvement (83%) as shown in the table below.

Aspects of research with public involvement

296 studies reported undertaking public involvement in their applications. We removed 17 studies which were for research tissue bank and research database studies from our analysis as these applicants are not asked for which aspects of their study had members of the public involved in it.

The analysis below was carried out on the remaining 279 applications that reported undertaking public involvement.

Our assessment of public involvement as reported in studies analysed

Whilst carrying out the analysis, we read many good applications where applicants clearly described the public involvement in their study, explaining:

• who is informing and influencing the study - how many people, the experience and perspectives they bring, and why this is relevant to the study
• how people are being involved - what activities, when, how often, how these are designed to be inclusive, and how members of the public are supported
• what difference it is making - a summary of the feedback or steer from people with relevant experience and what has been changed as a result

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 particular, we noticed:

• misunderstanding the question - some applicants ticked ‘undertaking the research’ but then described participation in research rather than public involvement in the ongoing conduct of research. Also, some applicants ticked ‘dissemination of findings’ but then described making results available to participants rather than working with people to plan how best to do this
• unclear or confusing information - some applicants mention working with a group or the intention to work with members of the public, without explaining who people are, how many people or how they have or would be involved
• missing information - some applicants describe in detail who they’ve worked with and how, but didn’t explain how people’s involvement is helping to make the study more likely to be relevant and acceptable to people who’ll take part in it, and to the people it is intended to benefit