CRN West of England Participant in Research Experience Survey 2021-22 Report

Summary

The Participant in Research Experience Survey (PRES) is a way for those taking part in research to anonymously share feedback about their experience. This feedback helps us to improve research delivery and ensure the best possible experience is being provided.

The survey is supported by the National Institute for Health and Care Research (NIHR) Clinical Research Network (CRN). In the West of England, the survey is distributed to participants by research delivery staff and is administered by the Clinical Research Network West of England (CRN WE).

This report is the analysis of responses received from the beginning of April 2021 until the end of March 2022. During this time, 2,332 people completed a PRES, a 107% increase from 1,126 responses in 2020/21.

As part of the survey, there is the space for participants to identify the site and study in which they participated. This information is important in providing specific feedback to study teams and delivery teams. In 2021/22, 1,924 responses included this information, a 165% increase from 725 surveys in 2020/21. We saw responses across 97 different studies, and from across all seven Trusts in the region and four Primary Care sites.

93% would consider taking part in research again
92% felt the researchers had valued them taking part in the research
93% felt the information they received before taking part prepared them for their experience on the study
72% felt kept up to date about the research
The responses showed that research delivery colleagues are an essential part of people’s positive experience of taking part in research

Background

In 2021/22, an incredible 84,691 participants across the West of England volunteered to take part in health and care research studies. Participants in the region were recruited into a total of 596 studies, with 46,538 participants volunteering in COVID-19 related studies.

Qualitative responses

What was positive about your research experience?

1,813 (78%) respondents left a comment explaining what made their research experience positive.

920 comments (51%) mentioned the friendliness and professionalism of research delivery staff.

“The staff were always helpful, polite and regarded my confidentiality.”

“Everyone who I have met has been very nice, clear and informative about what is happening.”

“Your staff! So fantastic, warm, knowledgeable and caring. Especially in the face of a pandemic!”

“The 'nothing is too much trouble' approach of the research personnel.”

491 comments (27%) expressed feeling that they were contributing to improving healthcare for others.

“I want to help the NHS, and this research study helps me to do that”

“It’s nice to do something that’s useful, relevant, and that may help others”

“It felt as though i was contributing in a tiny way to help understand more about COVID”

374 comments (21%) mentioned they had experienced good communication during the study. This included feeling that the study had been explained well to them and they felt they were kept up to date about what was happening.

“Good communication, well planned out schedules, timely appointments/swab reminders.”

“The study has been very clear in communicating risk and given lots of good quality information.”

“The study changed over time and we were kept informed.”

304 comments (17%) said they felt the research study was easy to take in part and/or well organised.

“It was easy to self-refer and do the screening questionnaire online.”

“Everything was handled very professionally.”

“It has been well organised. Timely reminders are sent out and the staff have been lovely.”

209 (12%) of respondents mentioned experiencing personal benefits from taking part in research, such as increased testing or health improvements.

“It offers me the possibility of long term stability of my condition.”

“Having access to medical staff above and beyond what I normally would.”

“The speedy access to cancer treatment, regular monitoring and timely operation.”

“Regular check-ups and reassurance.”

Other comments mentioned enjoying the experience of taking part in research, financial reimbursement, convenient site locations and gaining a feeling of hope.

What would have made your research experience better?

1,415 (61%) respondents did not leave an answer for this question. 176 (7%) of the respondents who commented said that nothing could have made their experience better.

Across the remaining 741 (32%) respondents, we identified the following themes:

Participant communication

The most common issue that was highlighted was around participant communication, with 300 comments (64%) relating to this theme. This theme covered the following topics:

More information about the study results or updates about how the study is progressing (130 comments)
Access to results of personal tests (73 comments)
Study team being hard to contact, wanting clearer contact information and/or a single point of contact throughout the study (34 comments)
More general information about the study or about the condition (29 comments)
Method of communication (8 comments)
More or clearer information about expenses (7 comments)
Internal communication between staff and departments (4 comments)
Clearer information about what participants would be required to share during phone calls (4 comments)
Fewer emails (3 comments)
More information about potential side effects (3 comments)
Design of materials (3 comments)
Contact details being taken incorrectly (2 comments)

Appointments

127 comments (27%) related to appointments. This theme covered the following topics:

Greater flexibility of appointment times (34 comments)
Appointments in the same location or clearer information about location changes (26 comments)
Booking appointments in advance or having full list of appointments (17 comments)
Long waiting times (15 comments)
Appointments being disorganised or not booked (4 comments)
More time in appointments (4 comments)
Shorter appointments (1 comment)

Procedures and materials

81 comments (17%) related to the procedures and materials. This theme covered the following topics:

Technical issues with apps and/or equipment (29 comments)
Questionnaires being repetitive (25 comments)
Not enough explanation before the study (10 comments)
Ideas for improved clinical practice (7 comments)
Fewer tests (5 comments)
Too many and/or repetitive forms (4 comments)
Wanting more follow up tests (1 comment)

COVID-19

60 comments (13%) related to issues related to COVID-19. This theme covered the following topics:

Issues with NHS app and/or vaccine passports (25 comments)
More information/updates as the situation changed (15 comments)
Missing face to face contact (13 comments)
Issues with the unblinding process (4 comments)
Study interruptions (2 comments)
COVID-19 restrictions (1 comment)

Travel

53 comments (11%) related to travel and parking. This theme covered the following topics:

Less travel/research sites closer to home (21 comments)
Free or better parking (21 comments)
More/clearer information about travel and parking (11 comments)

Study arm/results

41 comments (9%) related to the arm of the study the participants were assigned to or the results they experienced. This theme covered the following topics:

Being in control arm (20 comments)
Wanting the study to continue for longer (8 comments)
Experiencing negative side effects (8 comments)
Wanting to see better results (5 comments)

Refreshments

31 comments (7%) related to refreshments. Respondents said they would have liked drinks or food available, or a voucher so they could purchase their own.

Payment/Recognition

14 comments (3%) related to payment and reimbursement. This theme covered the following topics:

Time it took to pay expenses (6 comments)
More payment (4 comments)
Method of recognition (4 comments)

Patient experience

14 comments (3%) related to the patient experience. This theme covered issues around consent and when participants were asked about taking part in research. Some of the comments mentioned staff communication, especially around sensitive topics. One respondent mentioned questions being ‘heterocentric and exclusionary to LGBTQ+ people’.

Meeting others

10 comments (2%) mentioned that they would have liked the opportunity to meet others taking part in the study.

Knowledge and experience

6 comments (1%) related to staff knowledge and experience. The majority of these comments were about the participant's experience when giving blood.

Quantitative responses

I would consider taking part in research again

Strongly Agree (76.7%)
Agree (16.7%)
Neither agree nor disagree (3.9%)
Disagree (0.5%)
Strongly disagree (1.5%)
No response (0.6%)
Invalid response (0.1%)

The information that I received before taking part prepared me for my experience on the study

Strongly Agree (70.6%)
Agree (21.9%)
Neither agree nor disagree (3%)
Disagree (0.7%)
Strongly disagree (1.5%)
Don’t remember (1.5%)
No response (0.8%)

I feel I have been kept updated about the research

Strongly Agree (49.2%)
Agree (22.9%)
Neither agree nor disagree (10.6%)
Disagree (3%)
Strongly disagree (2.4%)
Invalid response (0.2%)
It is too early to tell (10.2%)
No response (1.3%)

I know how I will receive the results of the research

Yes (34.8%)
Yes, to some extent (40.2%)
No (24.2%)
No response (0.8%)

I know how to contact someone from the research team if I have any questions or concerns

Strongly Agree (70.6%)
Agree (20.6%)
Neither agree nor disagree (5%)
Disagree (1.5%)
Strongly disagree (1.6%)
No response (0.6%)

The researchers have valued my taking part in the research

Strongly Agree (70.9%)
Agree (21%)
Neither agree nor disagree (5.5%)
Disagree (0.5%)
Strongly disagree (1%)
No response (1%)

Research staff have always treated me with courtesy and respect

Strongly Agree (87.7%)
Agree (8.5%)
Neither agree nor disagree (1.7%)
Disagree (0.2%)
Strongly disagree (1%)
No response (0.9%)

Recommendations

As we have seen in previous years, the responses received overwhelmingly demonstrate that the majority of participants in the West of England have a positive experience of taking part in research.

As we strive to continually improve participants' experiences of taking part in research, the feedback from the PRES is helpful in identifying potential areas of focus. Key themes from this year's feedback include:

Identify ways in which communication with participants, especially in relation to results of the study, can be improved.
Explore ways to inform participants if, when and how they will receive results to their individual tests.
Consider whether participants have been provided with clear information about how to get in contact with the study team.
Where possible, explore how participants can be offered more diverse clinic times, including out-of-hours and weekends.

Next steps

The points listed above will form the basis of discussions with participants and research staff about the areas that they feel are most important. The areas that are identified will be used to form projects led by the CRN which aim to improve the participant experience.

Responses from the ongoing survey are regularly shared with study teams to enable real-time analysis and improvements to practice. This will ensure participants’ experiences play a role in shaping how studies are delivered.

We are also already working on the following projects related to the participant experience:

Training for research delivery staff
We run a number of training programmes for research staff to provide them with the skills and confidence to communicate with participants, especially in relation to informed consent. We are developing a new inclusive research delivery workshop for research staff to help us deliver a rewarding and inclusive experience for those who take part in research in a health and care setting. We’ve held three focus groups with participants and research staff and we’re using their feedback to shape this training. There are also further courses in development focused on specific research settings and participant needs.

Public newsletter
We’re launching a newsletter aimed at members of the public where we’ll share participant stories, news about health and care research and opportunities to get involved. You can sign up via this form.

Research Champions
We’re recruiting Research Champions; members of the public who volunteer their time to spread the word about health and care research to the public and help healthcare staff understand more about the experiences of participants. If you’re interested in finding out more, please email our Public Engagement Team.

If you have any questions or for further information about anything in this report, please contact our Public Engagement Team.