Participant in Research Experience Survey (PRES)

Every year, the NIHR Clinical Research Network (CRN) asks thousands of research participants to share their experiences of taking part in research.

Through the Participant in Research Experience Survey (PRES), the NIHR aims to put participant experience at the heart of research delivery - helping to improve the way research studies are designed and delivered, now and in the future.

2022/23: Increased participation in the Participant Research Experience Survey (PRES)

In the 2022/23 financial year, 30,705 adult participants completed the Participant in Research Experience Survey (PRES). A 21% increase from 2021/22 (30,705 vs 25,459).

“(I was) made to feel that every contribution I made was valuable to the team. It was good to be part of a research trial that has made a positive difference and saved lives.”
Adult survey respondent, 2022/23

2022/23 is the second time that findings from the Children’s and Young People’s survey were able to be analysed alongside the adult survey. The number of responses has increased by 653% to 1,898 responses (1,898 vs 252).

“Staff were all very nice and explained the process well, so we always felt informed and valued as participants.”
Children and young people survey respondent, 2022/23

52 responses to three locally adapted surveys were also received.

To provide a more focussed direction for improvement the key results for 2022/23 look at responses from ‘Strongly agree’ or Yes only. Reporting from previous years showed that the vast majority of participants saw their experience as being positive (strongly agree and agree). A focus on the most favourable response helps to give more insight and targeted recommendations for improvement.

Key results from the strongly agree category of the 2022/23 survey include:

• 58% of adults and 60% of young people felt valued by researchers for taking part in research.
• 72% of adults and 70% of young people said research staff have always treated them with courtesy and respect.
• 60% of adults and 57% of young people said they would consider taking part in research again.
• 62% of adults and 86% of young people felt the information they received before they took part in the study helped them prepare for their experience.

Read more results in the PRES 2022/23 Executive Summary report.

Despite the continuing pressures on the NHS, all 15 local CRNs and their partner organisations actively supported the delivery of this important survey. We would like to say a huge thank you to the research staff, the participants, and to the respondents of the survey for their valued contributions.

For a PDF copy of the full Annual PRES 2022/23 report, please contact the CRN Coordinating Centre.

The children and young people survey

To provide greater insight into how the age of study participants might impact on the research experience, an analysis of the adult PRES responses against the Children’s and Young People PRES was performed.

Participants in the Children’s and Young People survey were aged between 0 and 15 years. Three adapted survey versions are available depending on age:

• 0-6 years
• 7-11 years
• 12-15 years.

There was a large increase in the number of responses from 2021/22.

Responses were positive:

• Praising study teams for treating young participants with kindness and respect
• For staff providing information at the start of the research study that was easy to understand.

However they also identified areas of improvement, particularly about:

• Being kept updated
• Knowing how to contact someone from the research study

Young participants’ feedback will enable the NIHR to continue improving the delivery of research. The data gives a benchmark for measuring study performance and experience for future Children’s and Young People surveys.

The adult survey

The number of responses has increased by 21% in 2022/23.

Responses were most positive for:

• Being treated with courtesy and respect
• Receiving information before taking part
• That participants would consider taking part in research again.

Unfortunately scores for six out of seven questions have dropped across a three year survey period. Participants identified areas of improvement, including:

• The practicalities of taking part
• Improved information and communications
• Around their general experience of research participation

Feedback will enable the NIHR to continue improving the delivery of research. The impact of 2021/22 report recommendations and progress in 2022/23 can be found in the full Annual PRES 2022/23 report.

More information about PRES

What is PRES?

PRES is an annual nationally standardised survey used to collect adults and children’s views and experiences of participating in NIHR supported research. PRES was developed by the NIHR Clinical Research Network to demonstrate to research participants that their contribution is valued, and to help make meaningful improvements to research based on people’s real-life experience. It is the largest survey of its kind, with all 15 local Clinical Research Networks across England supporting it.

Why NIHR conducts PRES

Research is a partnership between the people who volunteer to take part, known as participants, and the researchers. Every year, the NIHR asks thousands of participants to give feedback on their experience to help improve the way research studies are designed and delivered, now and in the future, so that we can positively impact people’s experience of recruitment to, and taking part in, research.

The difference participant feedback makes

As far as possible, we want those who begin studies to be able to complete their research journey and go on to take part in further studies and even promote research participation to their friends and families.

• Feedback from research participants can help researchers understand both what they are doing well and where there are opportunities to improve.
• The responses we get to PRES can help shape research far beyond the study someone has taken part in, or the healthcare service they have used.
• Positive feedback is celebrated and can help motivate more people to get involved in research studies. It also helps researchers know that their work is valued by the people they are trying to help.
• Research teams are also able to use feedback about what didn’t go well to inform improvement projects. This has led to the introduction of many great new initiatives in research delivery teams across the country.

What NIHR does with the PRES results

Responses to PRES are kept anonymous. Each year, PRES findings are shared back with research teams at the health and care setting (e.g. a hospital, GP surgery, etc.) where you took part in the research. This enables research teams to learn what they are doing well and identify immediate opportunities to make improvements in specific research studies and local research settings.

Each of the 15 local CRNs will also produce a local, regional report. Nationally, NIHR also brings together all of the country’s responses and develops a national-level report. Some of the challenges participants experience simply can’t be dealt with by the research delivery teams alone - they are often issues that have arisen from the research design or even funding requirements. By completing PRES, participants can ensure their experiences are shared with the bodies that influence the whole research system.

How you can take part in PRES

If you are taking part in NIHR-supported health or care research and want to share your experience, speak to a member of your research team to find out how you can give feedback.

Research delivery teams interested in running PRES should contact their local CRN PPIE team or the CRN Coordinating Centre.