CRN Wessex Participant in Research Experience Survey (PRES) 2021/22 report

Contents

Overview

This report sets out the results of the NIHR CRN Wessex Participant in Research Experience Survey (PRES) 2021/22. For questions, or to request a PDF copy of the report, please get in touch on comms.crnwessex@nihr.ac.uk. 

Key PRES achievements for 2021/22:

• Largest range of studies to date sharing PRES with participants. Of the studies included in the report, 17 were COVID-19 studies and 54 non-COVID studies (see Figures 2 and 3).
• A total of 1,199 responses were received, which represents an increase of 143% on the 486 responses received in 2020/21.
• 93% of participants would consider taking part in research again.

Introduction

This report presents the findings of the NIHR CRN Wessex 2021/22 PRES. Delivery and reporting of the PRES is a requirement of the CRN Coordinating Centre (CRNCC).

Research teams across Wessex have played a critical role in the response to COVID-19 and still felt the impact of the pandemic throughout 2021/22. It greatly affected research delivery capacity within partner organisations, as teams worked hard to balance delivery of COVID 19 related studies with non-COVID research.

As we moved into the later part of the year, teams across the region were pleased to have a high number of non-COVID studies up and running again, which meant it was possible to deliver PRES across both COVID and non-COVID studies in 2021/22.

Participant feedback is key to ensure we meet the needs of our local communities and enables us to make any changes to improve our research delivery if necessary. The information collected from the PRES will help shape the future development of research in the region and identify ways to further engage members of the public in research across the portfolio. 

About PRES

The PRES was administered online and in paper form, using a national question set developed by the Picker Institute in collaboration with the NIHR CRNCC, which is shown in Figure 1.

Though the online survey allowed for real time reporting of feedback, it was important to also be able to offer participants the option of completing a paper survey. Local Clinical Research Networks (LCRNs) were asked to create their own digital version of the survey for 2021/22 and CRN Wessex used the SurveyMonkey platform.

The survey was circulated via the following means:

• A4 paper copies sent to R&D departments within trusts and research hubs in Bournemouth, Portsmouth and Southampton
• Research nurse team at CRN Wessex took copies of the survey to studies being delivered in primary care settings
• Business cards with a link and QR code were handed out at follow up visits
• Posters with a link and QR code were located in waiting areas
• Privacy policies printed and laminated for participants completing the survey on a visit
• An email link to the survey for participants in large studies such as NOVAVAX and COV-BOOST

Figure 1- PRES 2021/22 questions

Figure 2 - COVID-19 studies included in PRES

Figure 3- Non COVID-19 studies included in PRES

Response Rate

This year the number of responses we could gather from staff participating in research was capped at 334.

Only the adult survey was used as the studies did not recruit other participant groups.

An achievable PRES target was set for 2021/22, given the widespread impact of COVID-19. The regional target for CRN Wessex was 1,113 responses. More capacity within the team later in the year allowed for an increased focus on data collection, leading to a higher number of responses in Q3 and Q4.

A total of 1,199 responses were collected which meant we exceeded target by 6%.

Due to data discrepancies, some responses were removed before confirming this figure. However, all raw feedback will be provided to the Wessex sites who delivered PRES.

2021/22 survey results

Participants were asked to rate how strongly they disagreed or agreed with statements about their research experience by selecting responses on a likert scale.

The following summaries show the results of the Wessex PRES. All responses have been anonymised to protect the identities of staff and participants.

All partner organisations participating in PRES will receive the responses for their organisation in order to facilitate an organisation-specific analysis. 

Question 1 

Overall, 95.5% of respondents agreed that the information they received before taking part prepared them for their experience on the study. The full breakdown of responses were: 

• Strongly agree - 78.5%

• Agree - 17%

• Strongly disagree  - 2.5%

• Neither agree or disagree - 0.5%

• Not completed - 0.5%

• Disagree - 0.5%

• I don't remember  - 0.5%

Question 2 

76% of the overall respondents felt that they had been kept updated about the research:

• Strongly agree - 47%

• Agree - 29%

• Neither agree or disagree - 10.5%

• Strongly disagree - 3%

• It is too early to tell - 6.75%

• Not completed - 0.75%

• Disagree - 3%

Question 3 

Over half of those surveyed knew how they would receive the results of the study:

• Yes - 35% 

• Yes, to some extent - 44%

• No - 21%

• Not completed - 0%

Question 4 

95.5% of participants knew how to contact the research team if they needed to:

• Strongly agree - 68%

• Agree - 27.5%

• Neither agree or disagree - 2%

• Disagree - 1%

• Strongly disagree - 1%

• Not completed - 1%

Question 5 

Responses to feeling valued in taking part were:

• Strongly agree - 66.5%

• Agree - 28%

• Neither agree or disagree - 4%

• Strongly disagree - 0.5%

• Not completed - 1%

• Disagree - 0%

Question 6

98% reported that they had been treated well in the study: 

• Strongly agree - 90%

• Agree - 8%

• Neither agree or disagree - 1%

• Not completed - 0%

• Strongly disagree - 0.5%

• Disagree - 0% 

Question 7

Overall, 93% of those who completed the PRES agreed that they would consider taking part in another research study: 

• Strongly agree - 71%

• Agree - 22%

• Neither agree or disagree - 3%

• Strongly disagree - 2%

• Not completed - 1%

• Disagree - 1%

After rating the statements about their experience participants were also asked: 

Question 8 

How long have you been taking part in this research study?

69.5% were within the first year of the research study: 

• At least three months but less than one year - 37.5%

• Less than three months - 32%

• At least one year but less than three years - 25%

• Three years or longer - 3.5%

• Not sure - 2%

• Not completed - 0%

Question 9

Is this the first research study you have taken part in?

• Yes - 83.5%

• No - 16%

• Not completed - 0.5%

Question 10

Who completed the survey?

94.5% of the responses came from the person taking part in the study themselves: 

• The person taking part in the research - 94.5%

• Not completed - 0.5%

• The person taking part in the research with someone else - 5%

Free text answers 

Participants were then asked to explain their answers to the previous statements or provide any other feedback on their experience using free text boxes to respond to two questions:

• What was positive about your research experience?
• What would have made your research experience better?

Responses to the free text questions have been reviewed to identify common themes that emerge from the data. Positive themes were related to staff attitudes, timeliness and making a difference during the pandemic. Negative comments highlighted issues with parking, delays in hearing about study results and lack of incentives for taking part in research.

Theme one - Staff attitudes 

Language used to describe staff was positive with 520 responses citing that the people they met were “friendly”. Some respondents fed back on individual members of staff who had supported them during their visit.

These comments will be provided to lead nurses at each site to use in 1-1s and for personal development.

• “Everyone I have seen throughout the trial has been absolutely lovely - kind, friendly, cheerful and expressing thanks for us taking part. Glad to feel doing something towards the fight against COVID-19 too.” 

• “I am treated with the utmost courtesy and made to feel like a valued member of the team.”

• “The staff were attentive, knowledgeable and explained what and why they were doing certain tests and asking so many questions. I was made to feel valued and assured that my participation was helping to form medical opinions.”

• “During my two visits to the Hub I was treated with kindness and great tolerance especially with my many questions regarding the research.”

• “Each member of staff treated me with respect and kindness, I was made to feel valued.”

Theme two - Helping others

A particularly powerful theme to come from people wanting to help during the COVID-19 pandemic. There were 989 participants who said that they took part to make a difference to others.

• “I felt helpful.”

• “I was made to feel like I was helping to make a positive difference.”

• “Being able to do my bit during the pandemic.” 

• “I felt I was contributing to the overall COVID fight."

• “Feeling of doing something positive about Parkinson’s disease.”

• “I hope my participation in this research will help others experiencing breast cancer feel confident in the treatment they are receiving and the support available.”

Theme three - Efficiency and study administration 

129 responses highlighted areas for improvement for study administration. The majority of these responses (47%), were linked to COVID-19 vaccine trials, where participant experience was closely tied with the regulatory approvals for the vaccine. However, 91 participants still praised the organisation and efficiency of these studies:

• “Well managed, efficient research team. Clear communication at each step.”

• “Flexible and proactive to assist with quotations and queries.” 

• “It was always very organised.”

• “Efficiency and friendliness of the staff, clearly structured plan for the appointments, easy to use online diary, and feels good to be involved in something so important.”

• “All staff polite and efficient. Everything worked on time. Telephone queries quickly and efficiently dealt with. All staff trying to make participants feel valued.”

• “The efficient way that the whole experience was conducted from first day of volunteering through the attendance at the centre.”

Theme four - Parking and travel

Parking has historically come up as an area for improvement in Wessex PRES results. This year only 2% of participants reported a negative experience in parking when attending an appointment.

• “Parking extremely difficult and such a long way to walk from the car park, it would be impossible for some.”

• “The research site is a long way to and from the car park for someone with mobility issue I had to be accompanied, perhaps someone could’ve met me at the entrance and helped me to the venue and back to the car.”

• “Attendance site nearer home (1hr+ each way) however this would not stop me from volunteering again.”

Theme five - Overall communication

Over 100 participants praised study teams for their overall communication during the process. There were some areas for improvement such as participants expecting better communication on the results of the trial.

• “Knowing how to contact survey staff was positive. Lots of support from Survey staff - phoning me every month at agreed date and time (same person - so relationship develops as you move along the research journey).”

• “I have always had a good response to my emails and have received lots of detail about the ongoing trial.”

• “Being better informed of the progress of the trial.”

• “My consultant and nurses have explained in detail everything at every stage. All my questions have been answered most satisfactorily.

Theme six - Incentives 

Respondents commented that they would have liked a cup of tea or a biscuit at their appointment. Others mentioned that they would have appreciated receiving payment for their participation in the study.

Overall 28 respondents said they would have liked more incentives for taking part in research.

• “Lollipops after having blood taken :)”

• “More Biscuits and Coffee; although they did get me biscuits on some occasions.”

• “It would have been nice to have been paid for it. Other surveys you get £5 or so to complete it.”

Conclusion and next steps

This report highlights the positive experience that most participants received from taking part in research studies in Wessex over the last year and commends the staff involved. A clear theme of research making people feel hopeful shone through in the comments.

2021/22 Wessex PRES results will now be reviewed in detail by a newly established regional PRES working group, who will be responsible for sharing best practice, helping to identify improvement projects and creating an improvement plan. Alongside staff from the CRN Wessex core team, membership of the working group consists of staff and public representatives from partner organisations.

Partner organisations participating in PRES will also receive their own PRES response data in full, in order to facilitate more localised analysis.

PRES 22/23

CRN Wessex continues to roll out the PRES across all partner organisations. A pilot of stick and fold paper surveys is being implemented so that organisations and participants can send their feedback by freepost to a central processing team.

About NIHR CRN Wessex

CRN Wessex provides the infrastructure that allows high-quality health and social care research to take place for the benefit of patients and the public.

We help to increase the opportunities for people to take part in research and ensure that studies are carried out efficiently.

The Wessex region covers Dorset, Hampshire, the Isle of Wight and south Wiltshire. Find out more about our work: local.nihr.ac.uk/lcrn/wessex

Follow us on Twitter: @NIHRCRNWessex

Follow us on LinkedIn: @NIHRCRNWessex 

Follow us on Facebook: @NIHRClinicalResearchNetworkWessex

Contact information

For questions about the report or delivery of PRES, please contact comms.crnwessex@nihr.ac.uk. 

Glossary

• CRN - Clinical Research Network

• CRNCC - Clinical Research Network Coordinating Centre

• LCRN - Local Clinical Research Networks

• MHRA - Medicines and Healthcare products Regulatory Agency

• NIHR – National Institute for Health and Care Research

• ODP- Open Data Platform

• PRES - Participant in Research Experience Survey

• QR - Quick response

• R&D - Research & Development

• UPH - Urgent Public Health

Appendix 1 - CRN Wessex partner organisations delivering PRES

NHS Trusts

• Dorset County Hospital NHS Foundation Trust

• Dorset HealthCare University NHS Foundation Trust

• Hampshire Hospitals NHS Foundation Trust

• Isle of Wight NHS Trust

• Portsmouth Hospitals University NHS Trust

• Salisbury NHS Foundation Trust

• Solent NHS Trust

• South Central Ambulance Service

• Southern Health NHS Foundation Trust

• University Hospitals Dorset NHS Foundation Trust

• University Hospital Southampton NHS Foundation Trust

Research Hubs

• Dorset Research Hub

• Hampshire Research Hub

• Portsmouth Research Hub

Other partners

• General practices across Wessex