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Participant in Research Experience Survey (PRES) 2020/21

Contents

Introduction

The Participant in Research Experience Survey (PRES) has been conducted annually by the National Institute of Health 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 experience of taking part in research. PRES also 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 content and design is coordinated nationally by the NIHR CRN. The continual development of the survey is guided by the PRES Advisory Group. Analysis of the survey results is undertaken by the Picker Institute, on behalf of the NIHR CRN. The survey delivery is coordinated by 15 Local Clinical Research Networks (LCRNs), which together cover England, and their NHS partner organisations.

Executive summary

2020/21 was an extraordinary year for the research system in the UK due to the COVID-19 pandemic. The NIHR worked collaboratively with partners to support the efficient delivery of urgent research studies responding to the pandemic. NHS research teams were under huge pressure to deliver rapid studies, alongside the delivery of critical care for patients. Most partners who were delivering PRES prior to 2020/21 opted to do so again. The PRES feedback gained from some COVID-19 studies, including vaccine studies, was analysed at a national level throughout the year, enabling close to real-time adaptations in some sites to improve participant experience.

The 2020/21 adult participant survey received a total of 20,749 responses. This is a slight decrease from the 2019/20 survey (21,862), but nonetheless a significant achievement by study teams and LCRNs, given the pandemic context in which they were undertaking the survey in this period.

Survey delivery

Where the method of collection was usably recorded, 62% (10,790/17,285) were online. The largest proportion of respondents were participants in vaccine studies (44%, 9,041/20,749). Almost half of all respondents (45%, 9,430/20,749) replied between January and March 2021, which may be due to the pattern of delivery of vaccine studies. 4,540 respondents were participants from NHS staff studies (4,532 from SIREN, 8 from UK-REACH), and were therefore healthcare professionals, in addition to being research participants. This may have affected their perception of participating in research.

Survey results

For 81% of respondents it was the first research study they had taken part in. Around half (52%) of respondents had been taking part in the study for under three months.

Responses were highly positive, which is consistent with previous years:

  • 94% of participants said they would consider taking part in research again.
  • 93% of participants felt valued by researchers for taking part in research and 98% said research staff have always treated them with courtesy and respect.

Summary of quantitative findings

QuestionResult
Q1: The information that I received before taking part prepared me for my experience on the study 96% (19,521/20,434) reported Agree or Strongly Agree
Q2: I feel I have been kept updated about the research 89% (15,471/17,375) reported Agree or Strongly Agree
Q3: I know how I will receive the results of the research 81% (16,587/20,517) 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 93% (19,127/20,538) reported Agree or Strongly Agree
Q5: The researchers have valued my taking part in the research 93% (18,652/19,951) reported Agree or Strongly Agree
Q6: Research staff have always treated me with courtesy and respect 98% (20,108/20,619) reported Agree or Strongly Agree
Q7: I would consider taking part in research again 94% (19,454/20,622) reported Agree or Strongly Agree
Q8: What was positive about your research experience? (Free text) 87% (17,999/20,749) provided a useable response
Q9: What would have made your research experience better? (Free text) 67% (13,820/20,749) provided a useable response
Q10: How long have you been taking part in this research study? 52% (10,744/20,532) reported taking part for less than three months
Q11: Is this the first research study you have taken part in? 81% (16,675/20,505) stated Yes
Q12: Who completed the survey? 96% (19,678/20,749) reported they were the person taking part in the research

Participant 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.

Summary of participant feedback on positive aspects of their participation

Respondents were asked to feed back any specific positive aspects of their participation (Q8). Eight themes emerged from the data, and four were much more prevalent:

  • impact of the research team
  • motivation to participate
  • information and communication
  • practicalities of participating.
Theme
(numbers in sample)
Description/examples
Research team
(719 mentions)
Staff were friendly/professional/helpful/informative/kind/welcoming; staff treated me with respect; staff made me feel valued; provided quality care.
Motivation to participate
(383 mentions)
Happy to contribute to research; felt like I was helping people; wanted to be part of the wider picture; I felt useful and valued.
Information and communication
(362 mentions)
Clear explanations; kept updated throughout; received clear instructions; received enough information; clear lines of communication; regular emails; my questions were answered; information was detailed; staff were responsive.
Practicalities of participation
(338 mentions)
Well organised; efficient; arranging appointments with ease; appointment times were kept; safe environment; straightforward; ran smoothly; convenient; survey could be done from home; easy to participate; easy enrolment.
Treatment outcome
(131 mentions)
Reassurance; knowledge from participation, e.g. antibody status; gave me more confidence; the treatment has improved my condition/quality of life, e.g. eyesight improved; improvement to my physical health; knowing COVID status increased confidence when caring for patients.
Procedure
(83 mentions)
Happy being tested regularly; tests were simple and easy; receiving medication; regular monitoring/health check.
Nothing
(41 mentions)
Synonyms of the word nothing.
Other
(38 mentions)
Any other content.

Summary of participant feedback on what could have made their research experience better

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 three other large themes:

  • practicalities of participation
  • feedback
  • information and communication.
Theme
(numbers in sample)
Description/examples
Nothing
(486 mentions)
Synonyms of the word nothing.
Practicalities of participation
(334 mentions)
Free parking; easier parking; more local facilities; ability to have blood taken locally; less waiting time; ensuring appointments are on time; if the app worked well; drinks/snacks; shorter appointments; reminder emails/texts; more flexible appointment times; reduce wait for medication.
Feedback
(144 mentions)
Regular updates on overall trial progress; to receive results/conclusions of trial; regular updates on test results; inform participants of negative results, not just positive; more consistency in how results are communicated.
Information and communication
(114 mentions)
More information; clearer instructions; clearer information on procedures, e.g. how to perform nasal swab; an open line of communication with staff; providing contact details/phone numbers; provide shorter  documents; kept informed about length of participation.
General experience
(66 mentions)
Experience was great; nothing could be improved; I had a good experience; satisfied; positive experience; everything was okay/fine.
Procedure
(49 mentions)
Having a phlebotomist to carry out blood tests; fix limitations with daily diary; keep trial expectations same throughout, e.g. not having to receive a booster; not having to take unnecessary pregnancy tests; reduce the amount of questionnaires/updates participants are required to give.
Response from staff / team
(33 mentions)
More staffing capacity; more contact with staff; having more skilled/knowledgeable staff; nothing – staff were great.
Incentives / expenses
(21 mentions)
Financial compensation; reimbursement for travel/parking; vouchers.
Other
(9 mentions)
Any other comment.
Side effects
(6 mentions)
Not experiencing issues with weight loss/gain; not having negative effects from treatment.

Recommendations

Overall, the findings are positive. From the quantitative questions it is encouraging that a large proportion of respondents felt they were valued by the research team (94%, Q5) and felt they were treated  with courtesy (98%, Q6). Comments provided by respondents highlighted the professionalism, knowledge, and friendliness of the research team as contributing to positive experiences of being a participant in research. Clearly, research teams are significantly able to influence participants’ experiences.

However, there are some important opportunities for improvement, particularly with regards to information provision and communication. For example, one in four respondents (25%) did not Strongly Agree that the information they received before taking part prepared them for their experience on the study (75% selected Strongly Agree). This is significant as it may imply that at least some participants consented to take part without fully understanding the implications of their participation.

Additionally, only two-thirds of respondents (59%) said they Strongly Agreed that they had been kept updated during the study which indicates that the frequency and quality of information provided to many participants is inadequate and does not meet their expectations.

Comments from participants suggest that multiple channels of communication are necessary between participants and research delivery teams throughout the study, with different methods expressed as preferred ways to be contacted. Multiple methods of providing information including different media types (e.g. video, paper, etc) were highlighted as positives, and a one-size-fits-all approach is unlikely to suit the needs of all research participants. The digital apps used in some studies were frequently raised in responses as to what could be improved. It is vital that such tools are co-designed with intended users, and that digital platforms are not treated as a panacea to research delivery challenges, as they may introduce new problems for participants.

It is also concerning that almost a fifth of respondents said they did not not know how they would receive the findings of the study they had participated in (19%, Q3). It is possible that this is because the majority of respondents were in their first three months of a study, and the study team may not have thought this information was required yet.

However, given feedback that participants want to be better informed and updated about the study, providing this information as early as possible may be reassuring for participants. Equally concerning is that around one in fifteen said they did not know how to contact the research team if they needed to (7%, Q4). This is critical information that any participant should have easy access to.

These are our high-level recommendations:

  • Communication to research participants (information provided about the study and feedback) should be improved. Multiple channels and media types may be required.
  • Recruitment materials should be designed to emphasise the impacts of the research to potential participants and to appeal to the senses of altruism and reciprocity mentioned by respondents e.g. materials could highlight that being in a research study may provide enhanced monitoring of health status compared to ordinary care.
  • Practicalities of research should be respectful of participants’ schedules and time. Involving public partners in study design and walk-throughs of research sites to explore how delivery can be as accessible as possible could help with this.
  • Where data entry systems, such as apps, are provided to participants these should be tested for reliability and ease of use and co-designed with the intended users.

More information

For more information about PRES, or to request the full 2020/21 report, please contact the national CRN PPIE team.