About PRES
PRES has been conducted annually by the NIHR 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 helps those involved in the design and delivery of research to understand a participant's experience of a research study. Researchers can then co-produce solutions with study teams and patients. Solutions can then focus on the issues affecting recruitment and retention. This helps to make research as accessible and meaningful as possible for all volunteers.
This report summarises the results of the 2022/23 adult and children and young people’s PRES results. A full report is available on request by emailing crn.ppie@leeds.ac.uk.
Overall Findings
Children and young people’s survey
There were 1,898 Children and Young People (CYP) respondents, a considerable increase on 2021/22 responses. Of these:
- 82% responded to the 0-6 survey (1,551/1,898)
- 6% responded to the 7-11 survey (115/1,898)
- 12% responded to the 12-15 survey (232/1,898)
90% reported it was the first research study in which they had taken part. 75% of respondents had been taking part in the study for less than one year.
Responses were mainly positive, which is consistent with this year’s adult survey. Respondents strongly agreed that:
- research staff have always treated them with courtesy and respect (70%)
- they would consider taking part in research again (57%)
- they felt valued by researchers for taking part in research (60%)
Summary of quantitative analysis of children and young people’s surveys
| Question | 2022/23 % of respondents choosing strongly agree/agree | 2022/23 % of respondents choosing strongly agree |
|---|---|---|
| Q1. The information received at the start of the research was easy to understand | 97% (+9%) | 86% (+12%) |
| Q2. I feel I have been kept updated about the research | 87% (-5%) | 46% (-10%) |
Q3. I know how I will receive the results of the research |
87% (+12%) Reported Yes or Yes to some extent |
56% (+15%) Reported Yes |
| Q4. I know how to contact someone from the research team if I have any questions or concerns | 90% (-3%) | 46% (-21%) |
| Q5. The researchers have valued my taking part in the research | 95% (-5%) | 60% (-16%) |
| Q6. Research staff have always treated me with courtesy and respect | 96% (-4%) | 70% (-20%) |
| Q7. I would consider taking part in research again | 92% (-6%) | 57% (-20%) |
Adult survey
The 2022/23 adult participant survey received a total of 30,705 responses. This is a considerable increase from the 21/22 (25,459) and 2019/20 (21,862) iterations.
76% of respondents reported that it was the first research study in which they had taken part. Over half (59%) of respondents had been taking part in the study for less than one year.
Responses were broadly positive, though slightly lower than previous years. Respondents strongly agreed that:
- research staff have always treated them with courtesy and respect (72%)
- they would consider taking part in research again (60%)
- they felt valued by researchers for taking part in research (58%)
Summary of quantitative analysis of adult findings
| Question | 2022/23 % of respondents choosing strongly agree/agree | 2022/23 % of respondents choosing strongly agree |
|---|---|---|
| Q1. The information received at the start of the research was easy to understand | 93% (-2%) | 62% (-11%) |
| Q2. I feel I have been kept updated about the research | 77% (-5%) | 43% (-12%) |
Q3. I know how I will receive the results of the research |
74% (-5%) Reported Yes or Yes to some extent |
40% (-1%) Reported Yes |
| Q4. I know how to contact someone from the research team if I have any questions or concerns | 85% (-5%) | 47% (-21%) |
| Q5. The researchers have valued my taking part in the research | 91% (-1%) | 58% (-12%) |
| Q6. Research staff have always treated me with courtesy and respect | 95% (-2%) | 72% (-13%) |
| Q7. I would consider taking part in research again | 91% (-2%) | 60% (-14%) |
Discussion
The majority of CYP surveys (85%) were completed by the parent or carer of the child/young person. This is not surprising since the vast majority of responses to the children and young people’s survey were via the survey for 0-6 years, and 97% of these were completed by the parent or carer. For children/young people aged 7-11, 49% were completed by the parent or carer. The survey for 12-15 year olds was most likely to be answered by the child/young person (48%). Since in many cases it was someone other than the research participant who completed the survey, future surveys could look for ways to improve completion by CYP.
For 90% of children/young people, it was the first research study they had taken part in. Three-quarters (75%) had been taking part in the research study for less than three months.
Respondents gave particularly positive scores for the following:
- Being given information at the start of the research study that was easy to understand (86% said this was ‘easy’ to understand).
- Always being treated with kindness and respect by the research team (70% said ‘strongly agree’ ).
The least positive scores were around communication, as follows:
- Being kept updated about the research study (46% said ‘strongly agree’).
- Knowing how to contact someone from the research team if they had any questions or concerns (also 46% ‘strongly agree’).
Feedback was more positive this year compared to 2021/22 in relation to:
- The information received at the start of the research being ‘easy’ to understand (86% vs. 64%).
- Participants knowing how they would find out the results of the research (up from 41% to 56%) – albeit the score on this question has plenty more room for improvement.
Seventy-six per cent of adult respondents said it was the first research study they had taken part in. Fifty-nine per cent reported being in the research study for less than a year (37% for less than three months). As a general rule, older participants were more likely to have been involved in the study for a longer period.
The majority of adult research participants (93%) completed the survey themselves, however 13% of those aged over 75 had the help of another person or another person completed it on their behalf.
Scores for six of the seven questions have unfortunately dropped incrementally across the three-year survey period. Of particular note was Q4 ‘I know how to contact someone from the research team if I have any questions or concerns’: the percentage who said ‘strongly agree’ has decreased from 73% (2020/21) to 68% (2021/22) to 47% (2022/23). When combining the ‘strongly agree’ proportion with ‘agree’, there is still a year-on-year drop, though not quite as stark.
The only question in the adult survey that has not seen any substantial decline is Q3 ‘I know how I will receive the results of the research’ – though this is the lowest scoring question each year in terms of the proportion saying they ‘strongly agree’ (41% in both earlier survey years and 40% in 2022/23). Table 16 in the Appendix shows the changes in scores compared to 2021/22. It shows that whilst there have been moderate decreases in scores of the combined top two responses (e.g. ‘strongly agree’ + ‘agree’), far greater decreases are evident when looking at the top response only (e.g. ‘strongly agree’). One possible explanation is that post-Covid, many healthcare appointments have moved online, and for convenience reasons this is what people prefer and would like to see reflected in their research participation. Or the opposite might be true, that people want a return to face to face appointments and this is not happening?
Adult respondents gave the most positive scores in relation to:
- Always being treated with courtesy and respect by research staff (72% said ‘strongly agree’).
- Receiving information before they took part in the research study that helped prepare them for their experience (62% ‘strongly agree’).
- Reporting that they would consider taking part in research again (60% ‘strongly agree’).
The 2022/23 survey also highlighted some questions with low positive scores overall, all around the topic of communication:
- Participants knowing how they would receive results of the research study (40% said ‘yes’).
- Being kept updated about the research study (43% ‘strongly agree’).
- Knowing how to contact someone from the research team if they had any questions or concerns (47% ‘strongly agree’).
Of note, participants aged over 75 reported less positive experiences than other age groups across all scores. It is possible that this is partly due to other people filling in the questionnaire on behalf of the participant, since proxy responses can sometimes be more negative. Regardless, it is crucial that participants are given all the information they need, in an understandable and accessible way. Differences in reported experience were also observed across ethnic groupings with Asian or Black participants often reporting less positive experiences, e.g. 50% said that they felt their participation in the research was valued compared to 60% of White participants.
By age, 25-34 year olds gave the most positive scores across all questions.
Recommendations
| Recommendations | Suggested actions |
|---|---|
| Continue to increase responses across LCRNs. | Work with LCRNs that have seen large increases e.g. North East & North Cumbria, to establish what mechanisms were used and communicate best practice and strategies back to other LCRNs. |
| Continue to improve survey accessibility. | Ensure equal access to different modes e.g. online or paper . Promote use of online PRES where possible as more cost-effective and sustainable. Ensure alternative versions of the survey e.g. the Easy Read and Large Print versions are reviewed and updated to suit participant needs. Ensure that an identifier is added to each alternative survey version to enable NIHR to track usage numbers. |
| Ensure that all research participants receive the information that they need, in a timely and accessible manner. | Sometimes participants felt forgotten about once they were recruited into the research study. For others, the information or communication did not suit their needs – participants aged 75+, and Asian and Black participants often reported a worse experience. Tailor communications to people’s individual needs. Introduce check-ins to ensure that participants have all the information they need and that they understand it and know who to direct questions to. |
| Check that any software used in research studies is accessible. | Improve Apps to ensure that they are suitable for everyone and easy to use. If people experience frustrations with the software, then it is possible they will drop out and/or not volunteer for future studies. |
| Explore variations in experience scores between LCRNson individual measures and facilitate sharing of best practice. | Collate experiences of LCRNs to establish current practice and pinpoint variations. For example, in terms of study information being given out, is there a set template or process that LCRNs follow? Work to develop a standardised way of working across all networks. |
| Investigate the potential impact that data from North East & North Cumbria had on the overall CYP results. | Conduct a sub-analysis to review CYP data with and without NENC. Consider how the potential impact of individual networks can be lessened in future years by applying a representative weight to the data set. |
| Examine CYP free text comments under the themes of ‘information and communication’ and ‘practicalities of taking part’ to pinpoint what separates a good from a not so good experience | In the CYP survey, ‘Information and communication’ and ‘practicalities of taking part’ were in the top three themes relating what could be improved in participants' experience. |
More information
For more information about PRES, or to request the full 2022/23 report, please contact the national CRN PPIE team.