More than 26,000 people who took part in NIHR-supported research told the NIHR what it was like. The Participant in Research Experience Survey (PRES) 2025/26 finds that most feel respected and valued, but only two in three were kept updated about their study, and older, White participants are over-represented in the feedback. For anyone recruiting people into dementia studies, it’s a useful reminder of what participants notice. If keeping people informed is on your list, see our posts on sharing clinical trial results with participants and staying connected with research participants.
This article is shared from the National Institute for Health and Care Research (NIHR). The original publication can be found at https://www.nihr.ac.uk/about-us/who-we-are/reports-and-performance/participant-in-research-experience-survey-2025-26
A national survey that asks adults and children what they think and feel about taking part in research supported by the NIHR.
Transforming participant insights into action
Each year, thousands of volunteers, including adults and children and young people (CYP) step forward to shape the future of health and care.
Through the Participant in Research Experience Survey (PRES), their real-world stories and feedback drive continuous, meaningful improvements in research delivery across England.
PRES became My Research Experience in April 2026. The survey is now online, making it quicker and easier for people to share their feedback. This change supports our digital goals and align with the NHS 10 Year Health Plan.
24,582 adult responses received for PRES across England.
In 2025/26, PRES received 26,479 responses from more than 1,400 NIHR Research Delivery Network (RDN) Portfolio recruiting studies.
This year saw the survey move to a ‘digital-first’ approach with the phased introduction of My Research Experience – making feedback simpler and easier for respondents.
Over 70% of responses received were via the online platform (19,000 responses), reflective of the national digital platform adoption across the RDN.
Enthusiasm for continued involvement in research remains strong, with 90% of adults saying they would consider taking part in health and care research again.
Digital platform will open the door to wider care settings
83% of responses came from hospital settings and just over 10% of responses from community and primary care settings.
The My Research Experience platform will enable us to better identify and track responses from studies being delivered across wider care, community-based and Primary Care settings.
In the future, participant feedback data will allow us to see this in real-time, supporting the government’s priority to move more care from hospitals into local communities.
Opportunity to reach more research participants
Over 1,400 NIHR RDN Portfolio recruiting studies already share the survey with participants. This represents approximately only a third of the RDN Portfolio studies recruiting in England during the year.
During 2026/27, we are working to broaden participation from more recruiting studies to ensure we have a better reflection of people’s experiences.
“Widening access ensures that every participant, regardless of whether they take part at home, in a care home, or in the community, has a voice in shaping future research. By capturing feedback across all settings, we can make healthcare studies truly inclusive and representative of the communities we serve.”
Angela Polanco, Head of Public Partnerships, NIHR Research Delivery Network
A strong experience, with more to build on
Both adults and children and young people taking part in research paint a positive picture of their experience, particularly in their interactions with research staff.
Insights from 2025/26 found that:
- 95% of adults and 90% of children and young people reported being treated with courtesy and respect
- 92% of adults and 81% of children and young people felt that research staff valued their participation
- 91% of adults felt the information received before taking part prepared them for their experience
- 88% of children and young people found the initial study information clear and easy to understand
“I felt really valued on each visit and that a resolution to my symptoms was important to the doctors, not just my taking part in the study.”
Research participant
Improving communication beyond participation is a priority
Participants shared that the information they received before starting their study generally prepared them well for what to expect.
Ensuring participants understand how the research is progressing and how their contribution is helping to achieve its goals is an important part of the research journey.
However, only 67% of adult survey respondents felt they were kept updated about the research study, and 73% understood how they would receive the results of the study.
To support research teams with communicating about their study, the report recommends ensuring:
- communication preference conversations with participants happen early, with contact information updated regularly; and
- signposting to study-specific communication channels (e.g. social media)
The report also signposts to the ‘Informing research participants of study progress and results toolkit‘ developed by Oxford Health NHS Foundation Trust. The toolkit provides practical frameworks, published literature and innovative approaches to help maintain participant engagement throughout and beyond the trial life cycle.
Addressing the age gap
The survey results highlight opportunities to broaden who we hear from in participant feedback.
Almost 65% of respondents were aged 55 or over, while younger adults aged 25 to 44 were less than 20%.
When compared with the year-of-birth data for people taking part in the NIHR RDN Portfolio research studies, that is 22% more people completing PRES in the 55 and over group than in the wider research participant population.
Reaching ethnic minority people
Most respondents identified as White (86%), while Asian participants accounted for 4.6% of responses, compared with 9.6% in 2021 UK Census data.
Responses from Black participants showed encouraging progress, increasing to 3.1% from 1.8% the previous year.
Delivery teams should focus engagement activities on boosting responses from these communities to improve the overall proportionality of national feedback data.
1,897 responses received for the Children and Young People survey.
Just 54% of all CYP responses were completed by a parent or carer on behalf of the child, while a small proportion were completed directly by young people independently.
Detailed demographic data such as age, gender, and ethnicity are not currently captured in the CYP survey.
To better represent young people’s experiences, a new CYP survey will launch in 2027. Developed in partnership with young people, the new survey will aim to better capture their experiences and perspectives directly.
Turning feedback into meaningful actions
Case study 1: Turning survey completion into a shared priority
The RDN team in South West Peninsula worked with University Hospitals Plymouth NHS Trust to increase the number of participants completing PRES.
By using trust iPads, participants completed the survey quickly and easily. This meant asking for feedback did not add to staff workloads or appointment times, making teams more confident about offering the survey routinely.
Teams used feedback to make real-time, practical changes, such as introducing community visits and removing barriers to taking part. Following these improvements, participants reported feeling “genuinely heard and respected throughout their research journey”.
Case study 2: Improving patient experience through stakeholder engagement
The RDN team in South Central explored new ways to share participant feedback with key teams across the trust. They worked with the local trust’s Patient Advice and Liaison Service to help them understand the survey findings.
Together, teams used participant feedback to make improvements to the participant experience. It resolved issues with parking charges for people taking part in research and improved poor or unclear signage to research clinics. This approach increased use of the survey, while also strengthening the relationship between patient experience and research teams.
For a full copy of the report, contact the NIHR RDN Public Partnership team.
The NIHR held a webinar on the results of the 2025/26 survey on 3 November 2026.
My Research Experience survey 2026/27
Participant experiences are at the heart of research delivery by collecting feedback from participants through My Research Experience surveys. This provides a comprehensive view of how research is perceived and experienced across the country.
We encourage all teams delivering NIHR RDN portfolio studies to offer My Research Experience surveys to participants.
These insights are used to drive national improvements, making participation more rewarding for people taking part and more effective for research teams.
Dementia Researcher
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