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CRN Wessex Participant in Research Experience Survey (PRES) 2020/21 report

Contents

Overview

This report provides the results of the NIHR Clinical Research Network (CRN) Wessex Participant in Research Experience Survey (PRES) 2020/21.

Key achievements

  • Delivered in all research hubs involved in COVID vaccine and prophylactic research
  • Inclusion of feedback from staff as participants
  • 96.5% of those who completed the PRES agreed that they would participate in another research study

Introduction

This report presents the findings of the NIHR CRN Wessex 2020/21 PRES. Delivery and reporting of the PRES is a requirement of the CRN Coordinating Centre (CRNCC).

The COVID-19 pandemic greatly impacted research delivery capacity within partner organisations and urgent public health (UPH) studies were prioritised, particularly vaccine trials. Following consultation with local Research and Development (R&D) leads, patient and public teams and senior nurses, the CRN Executive Group decided to deliver PRES in the three newly established research hubs in Bournemouth, Southampton and Portsmouth. Participants at the hubs were taking part in vaccine and prophylactic studies and staff from across the Wessex region, which covers Dorset, Hampshire, South Wiltshire and Isle of Wight, were supporting delivery of the trials.

Participant feedback is key to ensure we meet the needs of our local communities and enables us to improve our research delivery. The information collected from the PRES will help shape the future development of the research hubs and identify ways to further engage members of the public in research not just for continued COVID work, but also across the wider portfolio.

About PRES

The PRES was administered via an online survey. This allowed for real time reporting of feedback. Paper forms were not used owing to concerns about infection prevention and control during the pandemic. Local CRNs (LCRNs) were asked to create their own digital version of the survey for 2020/21 and CRN Wessex used the SurveyMonkey platform.

The survey was circulated via the following means:

  • Business cards with a link and QR code handed out at follow up visits
  • Posters with a link and QR code located in waiting areas
  • An email link to the survey for staff participating in SIREN study, from the R&D team

A list of COVID-19 vaccine and prophylactic studies which were included in PRES is provided below in Table 1. 

Table 1- COVID-19 vaccine studies included in the 2020/21 CRN Wessex PRES

Study IDStudy name
45367 A phase I/II trial of a candidate COVID-19 vaccine (COV001)
45551 Investigating a Vaccine Against COVID-19 (COV002)
46068 Clinical trial of a SARS-CoV-2 vaccine in healthy men and women (COVAC 1)
46787 A trial to evaluate SARS-COV-2 recombinant nanoparticle vaccine
47183 PROVENT
47465 Valneva
47462 CoVLP
46804 ENSEMBLE 2
phase 3 COVID-19 vaccine study
47323 STORM CHASER
48289 COMCOV

Following the roll out of PRES in the research hubs, the SIREN study (ID 45906) was added at the request of partner organisations. A large amount of staff resource went into running this study so it was important for sites collect feedback. This data was shared with the local CRN lead for the study as part of discussions about recruitment and retention.

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

Response rate

Given the widespread impact of COVID-19 and the need to recruit to UPH studies, a target was not set for PRES 2020/21. However, CRN Wessex had an ambition to receive 350 responses. This allowed for data collection commencing later in the year than usual and based on the potential recruitment numbers for the planned vaccine and prophylactic trials which were due to open in the region.

A total of 486 responses were collected.

Participant demographics

Participants were given the option to share their age and ethnicity as part of the survey.

To help protect the identity of those who responded, only the year of birth was captured and responses were reported in age brackets on the Wessex Open Data Platform app. The results are shown in Graph 1. Graph 2 shows the ethnicity data collected for respondents of the CRN Wessex 2020/21 PRES.

Graph 1- Age of respondents reported in CRN Wessex 2020/21 PRES

Graph 1 shows the ages of respondents who chose to share their age whilst completing the CRN Wessex 2020/21 PRES. The known ages of participants ranges from 20 to 79 years of age. Of participants who opted to share their age, the graph shows that the majority of participants (over 30%) were aged between 50-59. This was closely followed by the 40-49 age bracket, which made up over 20% of participants. Less than 10% of participants were aged between 70-79. Just under 10% of participants did not share their age. 

Graph 2- Ethnicity of respondents reported in CRN Wessex 2020/21 PRES

Graph 2 shows the ethnicity of respondents completing the CRN Wessex 2020/21 PRES. Of those that opted to share their ethnicity, the graph shows that the majority of participants (over 90%) were white. Less than 10% of participants who reported their ethnicity were Asian, Asian British or from other ethnic groups. A small number of participants (less than 5%) did not provide ethnicity data. Of the participants that opted to share ethnicity data, there were no participants from mixed or multiple ethnic groups or a Black, African, Black British or Caribbean background. 

Survey results

Participants were asked to rate how strongly they disagreed or agreed with statements about their research experience by selecting one of the responses below. 

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

Statement 1: The information that I received before taking part prepared me for my experience on the study

Overall, 84% of respondents agreed that they received enough information before the study. The full breakdown of responses were:

  • Strongly agree - 80.0%
  • Agree - 14.0%
  • Strongly disagree - 2.7%
  • Neither agree or disagree - 1.5%
  • Not completed - 1.0%
  • Disagree - 0.6%
  • I don't remember - 0.2%

Statement 2: I feel I have been kept updated about the research

81.1% of the overall respondents felt that they had been kept updated about the research. The full breakdown of responses is included below: 

  • Strongly agree - 61.0%
  • Agree - 27.1%
  • Neither agree or disagree - 4.6%
  • Disagree - 2.3%
  • It is too early to tell - 2.1%
  • Not completed - 1.5%
  • Strongly disagree - 1.3%

Statement 3: I know how I will receive the results of the research

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

  • Yes - 53.0%
  • Yes, to some extent - 38.4%
  • No - 7.3%
  • Not completed - 1.3%

Statement 4: I know how to contact someone from the research team if I have any questions or concerns

The majority of participants knew how to contact the research team if they needed to:

  • Strongly agree - 59.6%
  • Agree - 33.7%
  • Neither agree or disagree - 2.4%
  • Disagree - 1.6%
  • Strongly disagree - 1.4%
  • Not completed - 1.2%

Statement 5: The researchers have valued my taking part in the research

Responses to feeling valued in taking part were:

  • Strongly agree - 63.9%
  • Agree - 29.6%
  • Neither agree or disagree - 4.5%
  • Strongly disagree - 1.0%
  • Not completed - 0.8%
  • Disagree - 0.2%

Statement 6: Research staff have always treated me with courtesy and respect

96.4 % reported that they had been treated well in the study:

  • Strongly agree - 78.8%
  • Agree - 17.6%
  • Neither agree or disagree - 1.4%
  • Not completed - 1.2%
  • Strongly disagree - 1.0%

Statement 7: I would consider taking part in research again

Overall, 96.5% of those who completed the PRES agreed that they would participate in another research study:

  • Strongly agree - 72.2%
  • Agree - 24.3%
  • Neither agree or disagree - 1.4%
  • Strongly disagree - 1.0%
  • Not completed - 0.6%
  • Disagree - 0.4%

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

Question 1: How long have you been taking part in this research study?

Most were within the first year of the research study:

  • At least three months but less than one year - 71.8%
  • Less than three months - 20.4%
  • At least one year but less than three years - 5.7%
  • Not completed - 1.6%
  • Not sure - 0.4%

Question 2: Is this the first research study you have taken part in?

  • Yes - 72.0%
  • No - 25.3%
  • Not completed - 2.7%

Question 3: Who completed the survey?

Almost all of the responses came from the person taking part in the study themselves:

  • The person taking part in the research - 96.7%
  • Not completed - 2.4%
  • The person taking part in the research with someone else - 0.8%

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?

Analysis

Responses to the free text questions have been reviewed to identify common themes that emerge from the data. Positive themes were related to staff, the efficiency of the visit and motivations for taking part.

Staff

Language used to describe staff was positive with 107 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 were provided to lead nurses at each site to use in 1-1s and for personal development.

“All staff I have met or exchanged emails with, have shown care & consideration, always polite, friendly & reassuring - very professional.”

The positive impact of the staff was also reflected in comments about future participation in research: 

  • “All the team members have been excellent and I have never been involved in anything like this before. They have made it a very good experience and one I would be very happy to repeat. They are a credit to the team.”
  • “The staff are so friendly and kind. Able to contact them easily if I have any questions. They are very passionate about what they do, which inspires me to continue and be involved in other trials.”

Also of note, was that participants reported a good process of continued informed consent;

  • “Medical staff always ask if I wish to continue to be part of the study.”
  • “I am always asked at every appointment if I’m happy to continue which I have been but don’t feel I couldn’t discontinue if wanted.”
  • “The staff are very friendly, always checking if I am still happy to continue with the study and reminding me that if at any time I am not comfortable with continuing the study I can pull out at any point.”

Efficiency of visits

As well as the positive feedback regarding staffing, the efficiency of the visit was reflected in the free text comments.

The set up was seen as well organised and participants felt well informed about what to expect. One respondent commented “Plenty of clear detailed information supplied, all medical staff friendly, welcoming and courteous.” Another said of visiting the hub - “Location easy to find and convenient for access.”

Motivations for taking part

There were personal motivations for taking part in the studies. In particular, SIREN participants found the offer of more regular testing a benefit:

  • “Weekly swab tests & 2 weekly blood tests have made me feel more confident that I had not contracted a covid infection.”
  • “It gives me reassurance, and confidence.”
  • “Interest to see how long I have positive antibodies... nearly 12 months.”

Participants also felt they were contributing to something that helped the wider population:

  • “Feeling part of something worldwide” was mentioned by one respondent.
  • “It’s good to be involved in something that helps in anyway to find out more about the current pandemic.”

As well as the perceived benefits of additional testing and access to vaccines, participants also valued the additional health care checks which they received as part of their trial:

“Just the friendly people and probably for me personally having my blood pressures monitored.”

Improvements from the free text comments related to overall trial progress, the location of the study site and data sharing and digital solutions.

Overall trial progress and outcomes

While it is acknowledged that many participants were at the start of their trial journey (often at first follow up), many expressed a desire to know more about the progress of the trial they were in or overall vaccines work:

  • “Learning a bit more on how the overall trial was progressing and what the early results are showing and how approval of the vaccine was progressing. I had to search the Internet on this.”
  • “More regular results from the study.”
  • “perhaps more detailed information on how the work is progressing, both in terms of results and of how the information will be used as the course of the disease is moving on.”

Participants acknowledged that the results may not be available immediately:

  • “Having some feedback about what the research is achieving - although this may be too early at this stage.”
  • I am very interested in the outcome of the study & any feedback would be welcome as soon as its available.”

Location

Both the research hub participants and staff participating in the SIREN study indicated that more accessible sites would have helped their experience:

  • “If the study centre had been a little closer to home”
  • “More locations to attend making it easier to attend regularly”
  • “Not having to travel a near 40 mile round trip”
  • “If there were more clinic locations closer to my base”

Access to information

There was feedback to indicate that people prefer a paper-light trial and feel that information sharing should be easier:

  • “Possibly being able to access my results online?”
  • “Not having to fill in all the paperwork on my medical history that the NHS has already”
  • “Not having to go through my medical history, they should have access to my records. Reduce the amount of paper please”
  • “Only one version of pretrial papers, plus a single sided summative overview”
  • “It could be sped up a lot by reducing the amount of paperwork…We live in a digital age.”

Visibility of research teams

Respondents expressed that they would have liked to know the research staff a little better and have a link with those running the study:

  • “It is strange not knowing who the team behind the research are/the link person for our setting”
  • “greater feedback from the national agency running the research”
  • “Possibly bit more contact with doctors”

Conclusion and next steps

This report highlights the positive experience that most received from taking part in the vaccine and urgent public health portfolio over the last year and commends the staff involved. However, it does highlight the lack of diversity in those taking up opportunities in research. The survey was also delivered online which may not have been accessible for all participants.

As the managed recovery process commences CRN Wessex plans to role out the PRES across all partner organisations and specialty areas. A return to a mixed method of paper and digital surveys is planned. Improvements and sharing of best practice will continue to be reviewed as part of the PRES improvement plan 2021/22.

About CRN Wessex

The NIHR Clinical Research Network 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 Hampshire, Dorset, Isle of Wight and south Wiltshire.

Find out more about our work by visiting local.nihr.ac.uk/lcrn/wessex

You can also follow us on Twitter using @NIHRCRNWessex

Contact information

A copy of the full data set can be obtained by contacting Alex Jones, CRN Wessex Research Delivery Manager: alex.jones@nihr.ac.uk.

Glossary

  • CRN - Clinical Research Network
  • CRNCC - Clinical Research Network Coordinating Centre
  • LCRN - Local Clinical Research Networks
  • NIHR – National Institute for Health Research
  • PRES - Participant in research experience survey
  • QR - quick response
  • R&D - Research & Development
  • UPH - Urgent Public Health