Introduction
The Participant in Research Experience Survey (PRES) has been conducted annually by the 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 experience of taking part in research.
PRES promotes collaboration between research teams and research participants to co-produce solutions to challenges in research design and delivery that are identified through participant feedback.
PRES helps those involved in the design and delivery of research to understand the factors that impact participant experience of research. Researchers can then mitigate the issues that might negatively affect recruitment and retention and promote those factors that make research accessible and meaningful for volunteers.
This report covers the detailed results of the 2021/22 adult and children and young people’s PRES results.
Findings and recommendations
Adult survey
The 2021/22 adult participant survey received a total of 25,459 responses. This is a considerable increase from the 2019/20 (21,862) and 2020/21 iterations (20,749).
79% (19,934/25,249) of respondents reported that it was the first research study in which they had taken part (a decline from 81% in 2020/21). Almost two-thirds (62%, 15,580/25,286) of respondents had been taking part in the study for less than one year.
Responses were highly positive, which is consistent with previous years:
- 97% said research staff have always treated them with courtesy and respect
- 93% of participants said they would consider taking part in research again
- 92% of participants felt valued by researchers for taking part in research.
Summary of quantitative analysis of adult findings
| Question | Result |
|---|---|
| Q1: The information that I received before taking part prepared me for my experience on the study | 95% (23,487/24,835) Agreed or Strongly Agreed |
| Q2: I feel I have been kept updated about the research | 82% (18,520/22,679) Agreed or Strongly Agreed |
| Q3: I know how I will receive the results of the research | 79% (19,880/25,235) reported Yes or Yes to some extent |
| Q4: I know how to contact someone from the research team if I have any questions or concerns | 90% (22,542/25,167) Agreed or Strongly Agreed |
| Q5: The researchers have valued my taking part in the research | 92% (23,183/25,116) Agreed or Strongly Agreed |
| Q6: Research staff have always treated me with courtesy and respect | 97% (24,346/25,223) Agreed or Strongly Agreed |
| Q7: I would consider taking part in research again | 93% (23,416/25,256) Agreed or Strongly Agreed |
Adult feedback
The free text questions invite respondents to give further feedback in their own words about their experience of participating in research. A selection of these comments were analysed to understand the most common positive and negative experiences. Comments could be assigned multiple themes.
Respondents were asked to feed back any specific positive aspects of their participation (Q8). Ten themes emerged from the data (two greater than in 20221/20 – marked with an asterisk) regarding positive aspects of participation, with the same four themes as in 2020/21 having greatest prominence:
- Impact of the research team
- motivation to participate
- information and communication
- practicalities of participation.
Positive aspects of participation
| Theme (numbers in sample) | Description/examples |
|---|---|
| Research Team (297 mentions) |
Staff were informative/accommodating/friendly/competent/helpful/pleasant; made me feel at ease; interactions were excellent; the kindness of the doctor and the nurses from the research staff was outstanding. |
| Motivation to participate (195 mentions) |
Hope my contribution will help others; opportunity to help NHS in the future; being able to contribute to an important study feels good. |
| Information and communication (131 mentions) |
Clearly explained and was dealt with really well, kept me informed at every stage of the process, the knowledge given was clear and easily understood, made more aware of the condition and its effect, made aware of the research. |
| Practicalities of participation (106 mentions) |
Able to do everything online when it suited me, well organised; easy to complete survey; convenient times, ease of making appointments; straightforward; simple and easy to participate; efficient booking system; fit in with my working day. |
Additional themes were:
- Treatment outcome (77 mentions)
- Procedures (46 mentions)
- General Experience*(42 mentions)
- Nothing (40 mentions)
- Other (14 mentions)
- Vaccine Approval*(4 mention)
Respondents were also asked whether they felt there could have been anything that would have made their research experience better (Q9). Ten themes emerged from the data. While a large proportion commented that ‘nothing’ could have been better, there were four major themes:
- information and communications
- practicalities of participating
- general experience
- vaccine approval
What could have made the research experience better?
| Theme (numbers in sample) | Description/examples |
|---|---|
| Nothing (166 mentions) |
Synonyms of the word nothing. |
| Information and communication (149 mentions) |
More detailed information about taking part in vaccine studies and travelling abroad needed; staff unavailable, poor communication about the study, overwhelming information, did not understand what taking part would involve; unreliable reminder system for appointments. |
| Practicalities of participation (139 mentions) |
Difficulties with the study app, no choice in the format of information, appointments running over or being changed without consultation, venues for appointments keep changing, research site being too far away from home, study not fitting around school/work, no access to food and drink, questionnaire didn’t allow me to discuss what was important to me. |
| General experience (123 mentions) |
Didn't fully understand full implications of participating, would not have agreed to the trial knowing what I know now, not being treated with dignity and respect, poor updates from the study. |
| Vaccine Approval (104 mention) |
Poor coordination of participant vaccine status, inability to travel due to delays in vaccine approval. |
Additional themes were:
- Feedback about results/ progress (89 mentions)
- Procedures (76 mentions)
- Responses from staff (51 mentions)
- Other (22 mentions)
Children and young people survey
There were 252 Children and Young People (CYP) respondents. Of these, 42% (105/252) responded to the 0-6 survey, 26% (66/252) responded to the 7-11 survey and 32% (81/252) responded to the 12-15 survey.
78% (186/239) reported it was the first research study in which they had taken part. Two-thirds (67%, 160/239) of respondents had been taking part in the study for less than one year. These trends are comparable with what we see for adult responses.
Responses were highly positive, which is consistent with this year’s adult survey:
- 98% said research staff have always treated them with courtesy and respect
- 92% of participants said they would consider taking part in research again
- 95% of participants felt valued by researchers for taking part in research
Summary of quantitative analysis of children and young people’s survey
| Question | Result |
|---|---|
| Q1: The information received at the start of the research was easy to understand | 90% (187/208) Reported Somewhat Easy or Easy |
| Q2: I feel I have been kept updated about the research | 86% (192 /224) Agreed or Strongly Agreed |
| Q3: I know how I will receive the results of the research | 78% (188/241) Reported Yes or Yes to some extent |
| Q4: I know how to contact someone from the research team if I have any questions or concerns | 87% (213/245) Agreed or Strongly Agreed |
| Q5: The researchers have valued my taking part in the research | 95% (235/247) Agreed or Strongly Agreed |
| Q6: Research staff have always treated me with courtesy and respect | 98% (242/247) Agreed or Strongly Agreed |
| Q7: I would consider taking part in research again | 92% (227/248) Agreed or Strongly Agreed |
Children and young people’s feedback
As with the adult survey, the free text questions invite CYP survey respondents to give further feedback in their own words about their experience of participating in research. In total, 182 comments were suitable to be reviewed, and the same theming approach to the adult surveys was applied.
Respondents were asked to feed back any specific positive aspects of their participation (Q8). Eight themes emerged from the data regarding positive aspects of participation, with three of the same themes as the adult survey having greatest prominence:
- impact of the research team
- information and communication
- practicalities of participation.
Positive aspects of participation
| Theme (numbers in sample) | Description/examples |
|---|---|
| Research Team (122 mentions) |
Staff were good/fantastic/kind/fun/nice/understanding/amazing/friendly/gracious, let me split the sessions up when I got tired which was helpful, have made the experience so much better, answered all my questions, treated me and my child with respect, put us at ease. |
| Information and communication (52 mentions) |
Communication was supportive, easy to follow, well explained throughout, was kept up to date, information very clear and easy to understand, really clear about what the trial entailed, didn’t feel pressured. |
| Practicalities of participation (33 mentions) |
Quick visit didn't have to wait long, easily contactable, flexible with availability, same service as the GP but at home, appreciated seeing a doctor as well as a nurse, everything well organised. |
Additional themes were:
- Procedures (22 mentions)
- Motivation to participate (16 mentions)
- Treatment outcome (15 mentions)
- Nothing (5 mentions)
- General experience (4 mentions)
CYP respondents were also asked whether they felt there could have been anything that would have made their research experience better (Q9). Nine themes emerged from the data. A large proportion commented that ‘nothing’ could have been better, or gave neutral or positive comments about their general experience. A further three major themes were identified:
- practicalities of participating
- procedures
- information and communication.
What could have made the research experience better?
| Theme (numbers in sample) | Description/examples |
|---|---|
| Nothing (40 mentions) |
Synonyms of the word nothing. |
| General experience (15 mentions) |
Neutral/ positive comments. |
| Practicalities of participation (14 mentions) |
Difficulty travelling with young children, appointments times being changed, length of visit, delays in getting prescriptions, availability of food and drink. |
| Procedures (13 mentions) |
Length, number and the way in which procedures are carried out, level of self-monitoring required, length of study, lack of results seen on the study arm. |
| Information and communications (10 mentions) |
Duplication of information, clarity of information, difficulty for the participant in remembering what they have been told about the study, when they are ill. |
Additional themes were:
- Other (7 mentions)
- Feedback about results and progress (6 mentions)
- Response from staff/ team (4 mentions)
- Incentive/ expenses (3 mentions)
Overall findings and recommendations
Overall, the findings from the 2021/22 PRES survey are highly positive with similar findings across both the adult and CYP surveys. The majority of respondents reported that research staff always treated them with courtesy and respect (97% adults and 98% CYP, Q6) and felt valued by researchers for taking part in research (92% adults and 95% CYP, Q5). There was good agreement between both groups that they would take part in research again (93% adults and 92% CYP, Q7).
Feedback relating to the research team was the primary theme to emerge from analysis of responses to Q8 for both adults and CYP. Respondents were overwhelmingly complimentary about the staff they engaged with, citing friendly, helpful, and efficient staff as contributing to their positive research experience. For adults, feeling good about supporting the NHS and others remain important motivational drivers of positive research experience.
While respondent’s views do represent feedback from across England and from 1,100 studies across 30 health and care research specialties, 78% of studies had fewer than 10 responses. In total, PRES responses represent just 2% of participants enrolled in NIHR-supported studies and most likely represent the views of those who are most engaged. Moving forward, ensuring feedback from those who are less likely to have had a positive research experience and from diverse and under-served groups should be a focus to ensure their views are heard and learnt from. It should also be noted that 41% (99/241) of CYP responses were from the 0-6 years survey and of those, 92% were completed by someone on behalf of the research participant - most likely a parent, or other legal guardian or carer. Even with the oldest age group (12-15 years), only 50% of children responded independently. It is therefore likely that the CYP survey findings are largely representative of the views of parents and carers.
This year, there was a marginal decline in adults feeling the information they received at the start of the study prepared them for their participation. In addition, a unique theme emerged from the adult feedback related to the difficulties participants faced when taking part in COVID-19 vaccine studies. Around a fifth of respondents to the adult survey were vaccine study participants. Many participants reported that they felt disadvantaged because of taking part (e.g. unable to travel internationally), and a number reported they would not have taken part in the study had they known the difficulties they would experience. For CYP studies, overall 1 in 10 participants reported that the information received at the start was not easy to understand. Proportionally this was higher for those aged between 7-15 years who were more likely to respond to PRES themselves. Collectively, this indicates that more needs to be done to ensure participants are fully aware of the implications of taking part in studies. Feedback from both adults and CYP identifies a need for clearer, more accessible and age-appropriate information and communications for participants.
Question 2, which asked whether respondents had been kept updated about the research, experienced the greatest decline in positive responses by seven percentage points (from 89% in 2020/21 to 82% in 2021/22). Furthermore, one-fifth of respondents (21%) did not know how they would receive the results of the research (Q3). Similar results were reported from the CYP surveys; being more pronounced for the 0-6 years version. It is a requirement of the UK Policy Framework for Health and Social Care Research that study results are shared publicly, and of the NHS Health Research Authority that results dissemination plans include those who took part in the research. Given the importance that all respondents placed on information and communications, and that the majority of participants were new to research and still in their first year of participating, more work needs to be done to ensure advanced planning for how results will be shared so that this can be communicated earlier in the participant journey.
For both adults and CYP respondents the practicalities of participating were an important consideration. It is critical that research appointments can fit around work and family life, and that patients are offered a comfortable and consistent experience at the appointments. Efficient, clear and simple systems and processes were highly praised by participants and contributed to a good experience on studies. For the CYP survey, clinical procedures were an important consideration, in particular the time taken to carry them out and the way they were carried out was important. Collectively, this reinforces the need to build research protocols with the participant journey front of mind, and involving patients and the public in co-producing research is critical to make it easier for people to take part and participate through to the end.
There was a decline this year of four percentage points in the proportion of adult respondents who reported that they knew how to contact someone from the research team if they had any questions or concerns (Q4). Several respondents reported having difficulties during participation and being unable to contact someone for support. In the CYP surveys this was lowest for those answering the 12-15 years version, who were most likely to respond to PRES for themselves. Not only is this vital information that all participants must have access to, but is an important aspect of the relationship with research staff which is the biggest driver of positive research experience overall.
Variation in response by LCRN was significant and geographical location appears to impact participant experience greatly. Continuing to increase regional links and sharing examples of problems experienced and solutions found would encourage the enhancement and spread of good practice. For example, the proportion of respondents from Greater Manchester who ‘Agreed’ or ‘Strongly Agreed ‘that the information they received before taking part prepared them for their experience on the study (97%, Q1), they had been kept updated about the research (92%, Q2), that they knew how to contact someone from the research team if they had any questions or concerns (96%, Q4) and that research staff valued their taking part in the research (97%, Q5) was above the average for all LCRNs.
It should also be noted that the response profile across the three CYP survey versions suggests that the wording of the CYP surveys may need to be revisited and tested. When asked how long they had been taking part in the research study, 8% of respondents aged 7-11 selected ‘Not sure’, compared to 1% of respondents aged 0-6 and 3% aged 12-15. This might indicate a problem with the question wording for this age group. Revisiting the survey design/wording of the children's surveys and conducting user testing on the question set may increase engagement and participation from children and young people directly.
It is encouraging to see that feedback through PRES in 2021/22 has once again been largely positive, and some LCRNs have seen significant improvements in response to the questions. However, the overall downward trajectory of experience requires immediate action and there are some key areas of opportunity for improvement that have come from the responses received.
Summary of recommendations and suggested actions
Continue to promote and prioritise positive relationships between research site staff and study participants.
- The relationship with research staff remains a key influencer on the experience of study participants.
- Ensure staff have time allocated to build relationships with participants and respond to concerns and queries in a timely way. This may be particularly important to do with those for whom it is their first research experience.
Consider how recruitment and retention strategies could consider the specific motivations of potential participants and respond to these.
- Emphasise the altruistic benefits of volunteering for research and explain the difference participating will make.
- The benefits of taking part should be made clear in patient information including helping participants learn about their condition and about research.
Positive feedback relating to research staff should be disseminated to staff to recognise the role they play in ensuring participants’ experience is positive
- Delivery teams continue to play a leading part in the positive experience of research participants and continuing to build on these relationships is key.
- Local and national findings from PRES could be shared with delivery teams to celebrate these successes, and could be used to help emphasise the importance of relationship building when training new research staff.
Communication to research participants, specifically regarding information provision, study results, and dissemination of contact details should be improved for both adult and CYP studies.
- Information needs to be provided to participants at the right time and in the right format. Consent is an ongoing process, and the results from PRES show that some participants are not always clear on what will be involved in a study when they consent.
- Information should be co-designed with public partners who are representative of the intended participants - this will help ensure relevance and accessibility.
- When participants are volunteering their time to further medical research, it is vital that they are kept updated as far as possible on both their own progress but also of the trial overall. Where frequent updates are not possible, participants should be made aware of when and how they will hear about interim and final results.
- Participants should be kept informed of ways of reaching out to study teams with questions, and who their primary contact is.
Let participants know as early as possible in their research journey how they will receive the study results.
- As well as complying with guidelines, research teams should tell participants as early as possible how they are likely to receive the study results, and when. This can help manage expectations about timeframes upfront, as well as ensuring participants are as informed as possible about the whole research journey. This information should ideally be provided when the participant joins the study.
Ensure research activities are as easy and unburdensome as possible for participants and that realistic expectations are set from the start.
- Involve public partners early on in the co-design of the research. Walk-through the patient journey with them to get a better sense of the barriers such as travel, appointment scheduling, waiting times, comfort and other improvements to the research location that might be needed.
- Involve representative patients in discussions about tests and procedures that you want to undertake, are they all truly necessary, are any barriers for participants and how can they be overcome – understand what efficient and effective delivery looks like from the participant experience.
Increase the links between LCRNs to promote networking and to share examples of challenges and solutions, thereby encouraging the sharing of good practice.
- The experience of participants in research varies across England, and it is therefore up to the CRN as a whole to come together to improve by sharing knowledge and best practice.
Take steps to increase the response rate to the adult PRES and ensure we are reaching diverse and under-represented groups
- CRN should work to increase national coordination of PRES dissemination and collection (i.e, through the use of digital approaches, and centralised data processing) to increase local capacity to engage with wider groups.
- CRN should start monitoring the diversity of those taking part in PRES to increase understanding of any specific differences between groups in their experience of research to support better targeting of local improvement initiatives.
- Continue to monitor the accessibility of PRES and develop new formats that allow the widest possible audience the opportunity to feedback on their experiences.
Taking steps to increase the response rate to the CYP PRES to allow for more meaningful analysis by LCRN, and to increase the volume of qualitative feedback relating to the experience of participants aged 0 to 15.
- Children and young people are an under-served group in research, so we have a lot to learn from those already taking part regarding how the experience can be improved to help encourage others to participate.
- Almost one third of LCRNs did not collect any responses to the CYP survey, meaning participant voices in those areas are not being heard. Active measures should be taken to widen the distribution of the CYP PRES across the country.
- The CYP surveys have not undergone the same level of user-input into their design and wording as the adult survey. This could be revisited, consulting with children and conducting user testing with the relevant age cohorts, to increase data quality, engagement and independent response.
More information
For more information about PRES, or to request the full 2020/21 report, please contact the national CRN PPIE team.