Participant in Research Experience Survey (PRES)
- Published: 14 October 2024
- 5 min read
We are committed to involving as many people as possible in health and care research. It is therefore important to understand what impacts participants’ experience of research when designing and delivering research studies.
Every year, the Participant in Research Experience Survey (PRES) asks thousands of volunteers to share their experiences of taking part in studies. Through this study, the NIHR Research Delivery Network aims to put participant experience at the heart of research delivery, by using the data to improve accessibility, recruitment and retention to studies.
Findings from the 2023/24 Participant in Research Experience Survey (PRES)
Feedback from respondents to the 2023/24 survey, found the overwhelming majority felt that taking part in studies was a positive experience. In total, 91% of adults and 89% of children and young people in England said they would consider taking part in research again.
A total of 35,519 research participants completed the experience survey for 2023/24, which is the highest annual response to date.
The survey also found:
- 92% of adults and 91% of young people strongly agreed, or agreed they felt their contribution to research studies was valued by researchers and study teams.
- When asked about how they had been treated during their research trial, 95% of adults and 94% of children and young people felt that they were treated with kindness and respect during studies.
- More than 90% felt their voice was heard during their research experience.
- When being questioned about the communication between the research teams and participants, 93% of adults and 95% of children and young people agreed they were given clear information at the start of the research study.
“The research nurses and my consultant were absolutely fantastic. They treated me with such respect and it didn’t matter how many times I contacted them to ask a question, or if I was at all worried about anything, they put me totally at ease. It was an honour to take part in the trial, I couldn’t have got through my medical condition without them. 100% praise for them.”
“I felt that I could raise any questions or concerns and not be thought of negatively. In all honesty, the team has made this whole experience fantastic and even enjoyable.”
Where research could be improved for participants
The PRES survey also helps researchers consider issues that might negatively affect recruitment and retention so they can adapt research delivery to be more accessible and easier to participate for volunteers. This helps better support participants’ wellbeing and in encouraging them to take part in research again.
One area identified for improvement from participant feedback, was ensuring volunteers know how to find out the results of a study they have participated in. In total, 77% of adults and 82% of children and young people said they knew how they would find out the results. While this is an increase from the previous year in the percentage of adults who said they knew how to find out the results (74%), it is a decrease in the percentage of children and young people, down from 87%.
In addition, only 84% of adults and 86% of children and young people said they knew how to contact someone from the research team if they had questions. This is down from 85% of adults in 2022/23 and 90% of children and young people the previous year.
The children and young people survey
Overall, there were 1,860 responses to the Children and Young People (CYP) survey, a similar response to the previous year. Surveys were completed by the children or young person themselves, or with their parent/carer.
Participants in the Children’s and Young People survey were aged between 0 and 15 years. Three adapted PRES survey versions are available depending on age:
- 0-6 years
- 7-11 years
- 12-15 years.
The survey feedback discovered that:
- 95% of CYP respondents agreed that the information they received prior to the research starting was ‘easy’ or ‘somewhat easy’ to understand.
- 75% ‘strongly agreed’ or ‘agreed’ that they had been kept up-to-date about the research, a decline of more than 10% since the previous year (87% in 2022/23).
- 82% of respondents said they knew how they would receive the results of the research, an increase of 7% since 2021/22.
- 94% ‘strongly agreed’ or ‘agreed’ that they or their child had been treated with respect. This showed a slight decline from 96% in 2022/23.
Capturing the voice of young participants’ will enable the NIHR to continue improving the delivery of research for all. The data gives a benchmark for measuring study performance and experience for this population and can be used to target future improvements to Children’s and Young People’s research design, delivery and experience.
Adult Survey Results - comparison with previous year
- 93% of adult respondents ‘strongly agreed’ or ‘agreed’ that the information they received prior to taking part in the study prepared them for their experience. This was the same percentage of the previous year.
- 72% ‘strongly agreed’ or ‘agreed’ they had been kept updated about the research study. This represented a slight decline on the previous year (77%).
- 77% of adults said they knew how they would receive the results of the study, up from 74% the previous year.
- 91% of respondents strongly agreed, or agreed they would consider taking part in research. The same percentage as the previous year.
Demographic profile of participants
In addition to study experience data, participant demographic data was collected alongside question responses. The highest percentage of total participants were aged between 65 to 70 years (16%) with 86% of adult participants reporting their ethnicity as White.
Acting Executive Director of the NIHR Research Delivery Network (RDN) Andy Ustianowski said: “It’s very important to understand what impacts participants’ experience of taking in trials.
“Volunteers are a critical part of health and social care research. Studies need to be designed and delivered in a way that makes them not just accessible to people, but also creates a positive experience, so they want to continue taking part.
“Information from the annual survey is used to help researchers consider what might affect recruitment and retention of volunteers so they can adapt their trials accordingly.
“This year’s survey results are very encouraging. It’s great to see so many people felt their contribution to research was valued and intend to take part in more studies. But there is always more we can do.
“In 2023-24, more than one million people in England took part in research supported by the NIHR Clinical Research Network. We’re very grateful to everyone who volunteered.
“The studies they took part in will lead to new and better treatments and can transform lives by improving healthcare. Without volunteers, most research simply would not happen.”
How PRES participant feedback has impacted trials
Previous participant feedback via the PRES survey was used in a number of ways to improve delivery of studies last year. Some examples are:
Norfolk and Suffolk NHS Trust developed research materials aimed at Children and Young People. They receive a research completion pack after a study has finished, which includes a Finding Your Results leaflet, a certificate or thank you letter, depending on the participant’s age and leaflets about mental health provided by their local library. Booklets on research contained artwork created by children and animal narrators.
Newcastle Patient Recruitment Centre, together with study sponsor, Enteromed Ltd, prioritised patients in the RELIEVE IBS-D trial, by providing the results in a patient-friendly webinar to maximise access for working participants. The results were presented by the Chief Investigator and EnteroMed, followed by an interactive question and answer session.
For a full copy of the report, contact NIHR Research Delivery Network Coordinating Centre Public Partnership team at rdncc.ppt@leeds.ac.uk