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Participant in Research Experience Survey (PRES) 2019/20


Published: 21 April 2022

Version: V1

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The Participant in Research Experience Survey (PRES) has been conducted annually by the National Institute for Health and Care Research (NIHR) Clinical Research Network (CRN) since 2015/16.  Through PRES, the NIHR aims to put research participant experience at the centre of research delivery by providing an opportunity for as many research participants as possible to share their research experience. PRES also promotes collaboration between research teams and research participants to co-produce solutions to research design and delivery challenges identified through participant feedback. 

PRES content and design is coordinated nationally by the NIHR CRN. The PRES Advisory Group guides the continual development of the survey, and the Picker Institute analyses the survey results on behalf of the NIHR CRN. The 15 Local Clinical Research Networks (LCRNs), covering England and their NHS partner organisations, coordinate survey delivery.

Executive Summary

The 2019/20 adult participant surveys received a total of 21,862 responses; more than 2.5 times the number of responses collected in the 2018/19 survey (8,507).

Survey delivery

Each LCRN developed their own local survey with partner organisations and public contributors. Each local survey included three nationally standardised questions. The mode of the survey varied by LCRN, with a mix of paper and online surveys used according to local needs. The survey was administered by the LCRNs and their partner organisations to study participants between 1st April 2019 and 20th March 2020. Around half of all respondents, 51% (11,216/21,862), replied between October and December 2020.

Survey results

Respondents were those who had taken part in health research within twelve months before completing the survey. Respondents included people who had just begun to participate in a study, people who had completed taking part, and people at some point in between. 

Questions analysed in this report are the three national standardised questions. Responses were highly positive, which is consistent with previous years:

  • 83% of participants reported that it was important for them to know the overall results of the research study.
  • 91% of participants said they had a good experience of taking part in research.
  • 40% of participants provided a comment about their research experience; 98% of these comments were from those whose experience was positive.

Summary of quantitative findings

It is important to me to know the overall results of the research study 83% (17,811) reported Agree or Strongly Agree
I had a good experience of taking part in the research study 91% (19,377) reported Agree or Strongly Agree
Use this space to tell us more about your answers to the above (free text) 40% (8,769) provided a usable response

Participant Feedback

The free text question invites respondents to give further feedback in their own words about their experience of participating in research. A selection of these comments was analysed to understand the most common positive and negative experiences. Comments could be assigned multiple themes.

Four key themes emerged from the data:

  • experiences of participating in research 
  • impact of the research team
  • feedback of results and communication
  • motivation to take part

Summary of participant feedback on various aspects of their participation

The estimated occurrence of each theme in the full data set is given.


Experiences of participating in research

2,722 (29%) estimated occurrences


  • Increased knowledge and information about diagnosis and treatment
  • Regular contact with healthcare professionals
  • Supportive, informative and knowledgeable professionals
  • Positive treatment outcomes


  • Side effects of medical treatment
  • Disappointment about no change or negative treatment outcome
  • Negative experience of procedures and processes
  • Problematic questionnaire phrasing or structure

Motivations to take part

720 (8%) estimated occurrences

Respondents motivations

  • Importance of research for future patients
  • Hoping for positive treatment outcomes
  • Regular support and information from the team
  • Making a personal contribution

Impact of the research team

2,178 (23%) estimated occurrences


  • Expertise and care
  • Person-centredness
  • Comfort and safety
  • Participants feeling fully informed


  • Some respondents noted time constraints on staff due to workload

Feedback of results and communication

2,544 (27%) estimated occurrences

Reasons respondents want to see results

  • Participants feel invested in the research
  • They would like to know whether their treatment outcomes have improved
  • They would like to know whether the research will be beneficial to future patients

Importance of communication

  • Participants being kept informed about procedures and research processes at all times
  • Research information being explained clearly
  • The research/trial team being available to answer any questions or address concerns
  • Participants being treated with respect and feeling valued


The survey findings demonstrate that most research participants have positive experiences. While encouraging, there is room for improvement: almost one in ten participants, 9% (1,962), did not agree that their experience was good. Addressing concerns for this group of people may help to encourage wider participation in future. 

A key positive experience of research participation was health reassurances, predominantly from increased knowledge about diagnosis and treatment, regular contact with healthcare professionals and positive treatment outcomes - with many respondents reporting this as a motivation to take part in clinical research. 

As well as positive treatment outcomes for themselves, other motivators were increased support and information from the research team and improved treatment outcomes for future patients. Some respondents also said they were interested in making a personal contribution and were motivated by feeling valued. A better understanding of people’s motivations for research participation could help research teams keep people more fully engaged with a study.

Relationships with professionals seem to be a key driver of participation experience. Respondents reported positive experiences thanks to supportive, informative and knowledgeable professionals. Most comments were positive and emphasised the importance of person-centred care and supportive relationships with the professional team. Being kept informed by the professional team and staff, making additional visits as comfortable as possible was appreciated by respondents. Participants felt well cared for and supported by “close-knit” teams. Workload pressures on staff time did feed into people’s negative experiences. Ensuring that staff are available to answer participant questions, provide information and give updates will help participants feel supported and could improve people’s overall research experience.

Around five in six respondents, 83% (17,811), agreed that it was important for them to receive results and information about the research in which they took part. People wanted information about their own outcomes – whether treatments had been successful or beneficial for them – and information about the research outcomes overall. Many respondents expressed a sense of feeling invested in the research they took part in and wanted to know whether it had been effective and would benefit other patients in the future. People involved in designing and implementing research studies should ensure that their projects include opportunities to provide understandable feedback on results to their participants. 

Respondents also highlighted the importance of regular communication throughout the research process. Some respondents reported they would feel more motivated to continue with research trials if provided with regular updates. Other respondents said it is important to be considerate when informing individuals if they have not been selected to participate or if their trial has been discontinued.

The negative experiences of participating were often linked with negative treatment side effects, leading to disappointment where outcomes were not positive, and vice-versa, or if people had to withdraw from the study. Some experience of procedures and processes also fed into negativity, including the arrangement of overnight hospital stays and appointments; dislike of needles, injections, large-sized tablets, and swabs; unsuitable venues such as a noisy and distressing assessment environment for someone experiencing Alzheimer’s; long waiting lists for treatment and scan results; and having to attend too many appointments. 

Other respondents reported problematic phrasing in questionnaires and would like more consideration for the inclusion of negative impacts of treatment.

These are our high-level recommendations:

  • Having clearly explained research information tailored to reflect people’s motivations for participating could help study recruitment and retention.
  • Ensure that study visits and procedures run as smoothly and simply as possible to make for a better experience, keeping people informed about research changes and procedures at all stages of the project.
  • Regular, positive communication from staff throughout the research process is essential to ensure participants feel respected and valued, and helps with motivation to continue with research trials.
  • Involve patients in developing research questionnaires to improve their sensitivity and inclusivity, and include questions about issues important to participants, such as the negative impacts of treatment.
  • When designing and implementing research studies, ensure that there are opportunities to provide feedback on results and the study’s impact to participants - this may help minimise negative experiences for individuals who have had a poor treatment outcome or experienced side effects of treatment.
  • Be considerate when informing individuals if they have not been selected to participate or their trial is discontinued. Offer additional support to those who have experienced treatment side effects, where outcomes were not positive, or if someone had to withdraw from the study because of the side effects.


We would like to thank all the research participants, and their family members or carers, who completed PRES in 2019/20, providing us with vital feedback on how to improve someone’s research experience. We thank the 15 Local Clinical Research Networks and their partner organisations for their work in coordinating the delivery of the surveys.

More information

For more information about PRES, please email the CRN PPIE team.