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Welcome

Your public involvement newsletter shares news and information for people who are interested in and planning public involvement in health and social care research.

Anyone can subscribe, just share this link.

By public involvement in research, we mean research that is done ‘with’ or ‘by’ the public, not only 'to', 'for' or 'about' them. This includes patients, carers, advocates, service users, and other members of the community. 

If you’re reading this, you’ll know that public involvement is important, expected and possible in all types of health and social care research. There are many ways that people with relevant experience can contribute to designing, carrying out and sharing research. And there is a wealth of information about how to do this well, so research is more inclusive, relevant and impactful.  

We hope this newsletter:

• makes that information easier to find
• shares useful learning and reflections

Let us know how we’re doing! Complete this quick survey to tell us if the newsletter is useful. And email the HRA’s public involvement team if there’s something you’d like to share or know more about.

Make sure you’re also subscribed to HRA Latest for:

• invitations to get involved in the HRA’s work
• HRA news and developments

In this month's newsletter

• New HRA data analysis shows promising improvement in rates of public involvement in research
• The voices of research: University of York podcast explores the power of public involvement
• Launch of our co-facilitated advisory group
• What information about public involvement do research ethics staff and Research Ethics Committees (RECs) need?

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New HRA data analysis shows promising improvement in rates of public involvement in research

The number of health and social care studies involving patients and the public in research has continued to increase, according to our latest data. 

As part of our annual analysis of public involvement in research, the overall number of applications reporting that they had involved patients or members of the public rose by 10%, from 74% in 2023 to 84% in 2024.

Naho Yamazaki, Deputy Director of Policy and Partnerships, Health Research Authority, said:

"Public involvement is expected and possible in health and social care research. I’m looking forward to seeing the results of next year’s analysis using applications made in 2025, to see if the improvements continue, and use the data to help identify where we may be able to provide further guidance and advice to support public involvement in all aspects of research."

The voices of research: University of York podcast explores the power of public involvement

Discover The Research Room, the official podcast from the York Trials Unit at the University of York. Each episode is your direct line to the heart of health research, featuring conversations with the study teams and the patient and public involvement members who play a vital role in their work. Each week hosts Lucy and Janine dive into the projects that truly matter, from pioneering medical devices to vital mental health studies, to show you how collaboration is improving people's health.

In the latest episode, they chat with Emma and Toni Wakefield, a mother and daughter who co-chaired the Patient and Public Involvement panels for the BAY trial. They share their experience of being involved in the study and how their input led to practical changes, such as making study materials more inclusive and ensuring the perspectives of young people and their carers were heard.

Plus, hear what a confidence boost leading the panels was for Toni and Emma, and get their top tips for anyone wanting to get involved in research, too.

The podcast is also available on all major podcast platforms, including Apple Podcasts, Amazon Music, Audible, YouTube and Spotify.

You can get in touch with The Research Room team at ytu-pod@york.ac.uk

Launch of our co-facilitated advisory group

Last month we told you about a new advisory group to help us develop a set of principles for simplified arrangements for consent in low intervention clinical trials. The group has now had its first meeting. It will meet 4 times until early 2026 and will have further input from a wider review network.

The group will be co-facilitated by Kirsty Edwards, HRA Policy Manager and Joanne Lloyd, public contributor. Kirsty and Joanne reflect on the importance of bringing together people with different points of view and experiences.

Kirsty Edwards:

"The advisory group will bring together a diverse range of expertise and perspectives to advise on a set of guiding principles. These principles aim to support the delivery of simplified arrangement for consent in important clinical trials, whilst maintaining public trust."

Joanne Lloyd: 

"I’m particularly interested in how simplified consent arrangements can reduce the burden on participants while also safeguarding autonomy and public trust.

"I’m passionate about the role of communication in making research more inclusive, especially for underserved groups.

"Together, we’re committed to creating principles that are considered and impactful."

What information about public involvement do research ethics staff and Research Ethics Committees (RECs) need?

To inform the review of participant information, and the study more widely, the application should include:

• who was involved
• how and when have they been involved
• how the input of the people involved has made the study ethically acceptable

When public contributors check this information in the application, it can help ensure the involvement is described clearly and accurately.

Complete this quick survey to tell us if the newsletter is useful. And email the HRA’s public involvement team if there’s something you’d like to share or know more about.