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

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

• Working with people and communities to improve how clinical trial results are communicated
• Latest data on sharing results with participants
• NIHR strategic commitment for public partnerships: action plan 2026 to 2027
• Help the James Lind Library tell the story of public involvement
• Webinar: public and patient involvement: how to do it well – and why it matters
• Working together to develop an agreement for public contributors working with the HRA
• Real-life examples and reflections on involvement and engagement in research
• What information about public involvement should researchers provide to the Confidentiality Advisory Group?

Accessing the newsletter

To change the size of the newsletter, click on the link at the top and zoom in using the ‘Ctrl’ and the ‘+’ symbols. To listen to the content, you can use a screen reader or the ‘read aloud’ function often found within the ‘accessibility’ features of many devices.

For support with this, or if you need the newsletter in a different format, you can read our guidance, email the This email address is being protected from spambots. You need JavaScript enabled to view it. at This email address is being protected from spambots. You need JavaScript enabled to view it. or call on 0207 104 8161.

Working with people and communities to improve how clinical trial results are communicated

Alongside other changes in clinical trials regulations, from 28 April 2026, sponsors of clinical trials of investigational medicinal products (CTIMPs) are legally required to offer a lay summary of results to those who took part in the trial or, where any participants lack sufficient mental capacity at the time results are shared, other relevant people. For example:

• the person who provided consent on their behalf, such as a parent on behalf of their child
• someone responsible for the participants’ care or welfare, such as a legal representative or next of kin.

The lay summary should be offered within 12 months of the end of the trial. The only exception will be if sponsors have a deferral or waiver in place.

Clive Collett, Head of Policy and Engagement, said:

‘Greater transparency helps earn people’s trust in research, leading to more people taking part in clinical trials and participants feeling more valued.’

One way research teams can prepare for this change is to involve relevant people early in the design of the study. This means involving patients, service users, carers, other advocates or members of the public. Engaging with the relevant people early will help to:

• decide how best to share findings with participants
• ensure participant information is clear – and sets out how results will be offered
• design lay summaries that are understandable to the people receiving them

Applications for research ethics approval need to include detailed information about how the results will be offered. And Research Ethics Committees want to know how you are working with the public in your research, because good public involvement is likely to address issues which are relevant to their review.

Latest data on sharing results with participants

We've recently published our latest research transparency data, which gives a full picture of compliance with policy requirements and expectations on registering research on a public registry, publishing results and sharing a lay summary of results with participants.

Information on sharing results of research covers data from clinical trials in the UK that completed in 2023. We measure compliance via a final report, which sponsors are required to submit to us within 12 months of their trial ending.

52% of trials told us they shared or are in the process of sharing their results with participants. 24% told us they did not share their results and results are unknown for 24% of trials, as they didn't submit a final report. Read our latest story for the full data set.

NIHR strategic commitment for public partnerships: action plan 2026 to 2027

On the occasion of their 20th birthday, NIHR have reaffirmed their ongoing deep commitment to public partnerships. 

A 5 point action plan sets out how the NIHR Coordinating Centre (NIHRCC) will work towards their strategic commitments in the 2026/27 financial year.

1. Embed research inclusion
2. Strengthen partnerships
3. Improve reward and recognition
4. Require feedback
5. Strengthen capacity and capability

For information or queries about public partnerships in NIHR, please email This email address is being protected from spambots. You need JavaScript enabled to view it..

Help the James Lind Library tell the story of public involvement

The James Lind Library is a website documenting the development of the fair tests of medical treatments.

The library is building a new section on patient and public involvement and engagement.

They are looking to receive records and primary sources to help tell the story of people and communities shaping health research.

James Lind Library are looking to receive:

• historical examples of patients influencing research
• records and primary sources
• articles and essays

The new section will sit alongside sections on systematic reviews, research reporting, and the use of evidence. It will help document the history of people and communities shaping research, and will be honest about the complexity and challenges.  

Webinar: public and patient involvement: how to do it well – and why it matters

Are you new to public involvement and wondering where to start? Or looking for concrete examples of public involvement in practice? 

The behaviour change communications agency Claremont recently hosted a webinar where a range of experienced speakers shared their views on best practice in public involvement. 

Listen to the recording to hear from:

• Angela Polanco, National Head of Public Partnerships, NIHR
• Bob Phillips, Professor of Paediatrics and Evidence Synthesis, University of York and Hull York Medical School; Honorary Consultant in Paediatric and TYA Oncology, Leeds Children’s Hospital; Director, Candlelighters Supportive Care Research Centre. 
• Dave Brown, a public contributor
• Kate Harvey, Head of Participant and Public Involvement, Our Future Health
• Naho Yamazaki, Deputy Director of Policy and Partnerships, Health Research Authority
• Suzanne Bird, Recruitment Strategist, Pfizer
• Tim Parry, Claremont

Working together to develop an agreement for public contributors working with the HRA

A public contributor and our public involvement manager, Dami, reflect on working together to develop an agreement that clearly explains expectations between public contributors and the Health Research Authority (HRA).

Public contributor:

​'Multiple contributors commented that significant effort had been invested to incorporate comments shared between draft versions, in particular, as shown by the “you said, we did” table which summarised feedback and actions taken, where possible.'

Dami:

'​The involvement of public contributors made a clear and tangible difference to both the content and tone of the agreement. Most notably, it helped ensure that the final document struck the intended balance between providing enough detail to be useful, without becoming overwhelming or inaccessible to readers who may be new to public involvement.'

Real-life examples and reflections on involvement and engagement in research

An open access e-book brings together reflections and insights on public involvement and community engagement in a range of settings.

Titled 'Public Involvement and Community Engagement in Applied Health and Social Care research: Critical Perspectives and Innovative Practice', the collection aims to enhance the quality and impact of health and social care research through meaningful Public Involvement and Community Engagement (PICE).

Lead editor Dr Will McGovern, Associate Professor at Northumbria University:

'Over the last two decades, PICE work has progressed from being an idea worthy of consideration to a central feature and requirement of research practice. As such, working together with members of the public and different communities based on location, identity, experience, and interest is now recognised as vital to the co-production of high-quality research, research design, and knowledge exchange. This is especially the case in health and social care.'

The collection is aimed at researchers who want to make sure that their work is inclusive, equitable and impactful, and each chapter offers a complete exploration of a specific aspect of PICE work, including real-life illustrative practice examples.

What information about public involvement should researchers provide to the Confidentiality Advisory Group?

Complete this quick survey to tell us if the newsletter is useful. And This email address is being protected from spambots. You need JavaScript enabled to view it. if there’s something you’d like to share or know more about.