Participant in Research Experience Survey (PRES) 2022-2023 Clinical Research Network West Midlands Report

Contents

Participant in Research Experience Survey (PRES) 2022-2023

Clinical Research Network West Midlands Report

Published July 2023

Introduction

The Participant in Research Experience Survey (PRES) offers those who have participated or are currently participating in research supported by the National Institute for Health and Care Research (NIHR),the opportunity to provide feedback on their experience. The survey has been conducted annually in the Clinical Research Network West Midlands (CRN WM) since the pilot in 2015/16 and is a way of  continuously improving the experience of those participating in research.  

The PRES is delivered by all of the 15 Local Clinical Research Networks (LCRNs) in England. In 2022/23 the CRN WM has once again worked with its Partner Organisations to deliver the PRES. There is a national question set and this has remained unchanged since 2020/21.  This report will give an overview of the results from across the CRN WM. 

We would like to thank all the research delivery staff across the organisations and the members of the PRES Working Group  who supported the delivery of PRES this year. A very special thank you goes to all the participants who provided feedback on their experience of taking part in research by completing the PRES. By doing this they are helping us identify what we are doing well and what we need to improve in the delivery of research for the benefit of research participants.

We hope you find this report both useful and interesting.

Executive Summary

1,658 valid responses to the PRES were received from across the West Midlands.  This is the highest total of responses ever received and compares to 1,523 in 2021/22 and 1,489 in 2020/21.

Overall, the responses were positive, reflecting that participants’ experiences of taking part in research were good. However, only 69% of participants strongly agreed or agreed that they knew how they would receive the results of the research and this was lower than the national average across the 15 Local Clinical Research Networks (LCRNs) in England. In contrast, 92% of participants strongly agreed or agreed that they would consider taking part in research again. This is higher than the national average across the LCRNs and is encouraging to see given the role the Network has in promoting and raising awareness of research.

The comments that the participants made in the free text questions also supported the generally positive experiences of the research participants. There are, however,  areas that have been identified as needing improvement. These are:

- Keeping participants updated about the progress of the research.

- Informing participants how they will receive the results of the research. 

Delivery of the PRES

During 2022-23 both paper and digital versions of the PRES survey were made available to sites delivering it. Previously, during the pandemic only the digital version was offered, but the paper version was reintroduced in 2022-23 as an option and nearly half of our responses were via that route. 

The Network was one of nine LCRNs that took part in the pilot of the centralised processing of data for the paper surveys only.  Sites were provided with the paper surveys, the QR Code and short link for the digital survey and supporting guidance documents. 

Throughout the year the PRES Working Group met on a monthly basis to review progress against the response target, agree strategies to increase awareness of PRES amongst research staff across the Network, increase the number of Partner Organisations delivering PRES, and improve the number of PRES responses received.

An online PRES event held in October 2022 was attended by over 70 colleagues from the Network and our partners. The purpose of the event was to raise awareness and knowledge of the PRES across the Network with a view to improving its reach.  Presentations included:

- What is PRES?

- Why is PRES important - a public/participant perspective?

- Examples of good practice in the delivery of PRES

- Use of the PRES findings from across the region

Discussions were also held on potential barriers to delivering PRES and how organisations are using or planning to use the findings. The feedback was very positive and staff were keen for further events to be hosted. A second event was held in April 2023  focussing on continuous improvement and use of PRES findings. Feedback following this second event identified the need for and the focus of future events e.g. practical support on how to promote PRES, how to engage research participants with PRES and learning from others experiences, during 2023-24.

In addition to the PRES events, monthly PRES Drop-ins were introduced in February 2023.  The Drop-ins are for 30 minutes, are informal, there is no set agenda, and they provide an opportunity to, for example, ask questions/advice, seek further information or share good practice in the delivery of PRES and use of PRES findings.  

The PRES Drop-ins are open to all who are involved in the delivery of PRES and following feedback these continue to be held on a monthly basis.

Responses by Site 

Participants from the top 10 Partner Organisations accounted for more than three quarters of the responses. The remainder were from 15 other NHS Trusts and also some who had been recruited online and were not allocated to a Trust.

Responses by Research Study

Responses were received from participants in 225 separate studies, but the top 15 accounted for just under half of the total, as shown in the following table.

Overall, the PRES responses received were from 28 of the 30 NIHR Specialties. Only  Ageing and Critical Care were not represented.  This demonstrates that PRES was delivered to a good cross section of the Portfolio.

PRES Results 2022-23

This section of the report highlights the responses to each of the questions of the survey where participants were asked to rate their response on a Likert scale - Strongly Disagree to Strongly Agree, unless otherwise stated.   

The table below shows the percentage of respondents who answered Strongly Agree or Agree to each statement. The previous years’ percentages are also included in order to show whether there has been an improvement or not. 

It is really good  to see that 95% of the participants strongly agreed or agreed that the information they were given prior to taking part in the study prepared them for their experience. This demonstrates that generally the information given to potential participants provides them with enough information, so that they know what to expect while taking part in the study. 95% is also consistent with previous years and it is encouraging to see that it is better than the average across all LCRNs.

When participants were asked if they felt they had been kept up to date about the research they were participating in only 75% strongly agreed or agreed.  It is disappointing that locally this is lower than in previous years as some of the Partner Organisations had started to look at different ways of updating participants. However, it is still higher than the national average. This is an area where improvements can continue to be made.

Only 69% of the participants strongly agreed or agreed that they knew how they would receive the results of the study that they were taking part in. This was not only 10-11% lower than in previous years but also 5% lower than the national average.  This would indicate that this is an area where improvements need to be made to enhance the participants’ experience.

While the majority of the participants, 88%,  knew how to contact someone from the research team  if they needed to, this was lower than in previous years.  However, it was higher than the national average. 

From comments received it was obvious that research staff valued the participants taking part in the research. This is also supported by 93% responding positively to this question. It is consistent with last year and also good to see that it is higher than the national average. 

Many of the comments that were made by participants when asked what had been positive about their research experience made reference to how they were treated by staff.  94% strongly agreed or agreed that they had always been treated with courtesy and respect and this is 2-3% lower than in previous years and is just (1%) lower than the national average.

When participants were asked if they would consider taking part in research again 92% strongly agreed or agreed. This is good to see, as once again, it demonstrates that participants were satisfied with their recent/current experience to consider taking part in another research study.

Participants were also asked how long they had been involved with the research and whether this was their first research study.

In addition to responding to statements on a Likert scale, participants were also given the opportunity to provide more information about their experience by responding to two free text questions:

- What was positive about your research experience?

- What would have made your research experience better?

The comments made for each question were reviewed and the main themes identified.

What was positive about your research experience?

Many participants commented that overall their experience of participating in the research was very good, with some saying they would consider taking part in research again. 

‘In my opinion it has been a perfect experience.’

‘My research experience was the best.’

‘I have found it all very good and (it) gives me peace of mind.’

‘Everything - very thorough and everything was explained fully. No negatives from the experience and would make me consider other studies.’

Health benefits

While taking part in the research, some of the participants acknowledged that it enabled them to become more knowledgeable about their condition and get answers to questions that they had.  Others really appreciated the increased monitoring that they received and their access to the most up to date treatment for their condition, along with being able to talk to experts.

‘The opportunity to take part in the research enabled (me) to become more aware of the condition and as a result I was able to find out answers to many questions I had. Taking aspirin was reassuring and helped me to stay positive about my condition as I felt I was doing the most I could to stay healthy. ‘

‘I find it very reassuring to be able to monitor my condition on a regular basis and understand it. It is also very reassuring to know that I can contact someone straight away and talk through any problems I may have. It is good to be able to communicate with people that specialise in my condition.’

‘The extra blood tests and being able to talk to experts when I had any medical worries.’

‘Being able to receive the most up to date treatment.’

‘Better understand the benefits of talking about my condition.’

Reasons for taking part

There were many comments from participants that identified the reasons why they had agreed to take part in the research.  Overwhelmingly they wanted to help others suffering from the same illnesses and conditions.  Several of them commented particularly on contributing to the increased knowledge and improved treatments that would be available as a result of the research. 

‘Knowing that my small contribution to research may have a big impact in the future.’

‘Relates directly to my health concerns and will be used to help others - feel I am valued and adding information to the research.’

‘Knowing that I could help to prevent future suffering of this cancer in people.’

‘Feeling I would be helping to improve treatments for myeloma.’

‘I feel happy to have taken part knowing that the results will help others.’

Communication

Participants were positive about the information that they were given and thought staff were very good at explaining about the research and responding to any questions that they may have. Overall the communication was good.

‘Communication has been consistently good throughout and I have felt that my participation was valued by the research staff.’

‘Good information, kind staff, took time to explain, kept in touch, kept me updated with study results.’

‘The staff undertaking the research at the hospital were always very good at explaining and very nice.’

‘Very good communication and organisation.’

‘Always felt that if I needed to know anything staff would explain.’

Research staff

Once again, as in previous years,  there were many positive comments made about the staff, with participants commenting on how friendly, welcoming, knowledgeable and professional they were.  Some of the participants also commented on how the staff always seemed pleased to see them. 

‘The staff were the best part. So friendly and welcoming.’

‘The staff were very friendly, helpful and explained everything. They didn’t mind if I had any questions if I didn’t understand anything.’

‘The staff look as they are always pleased to see you, and they always make you feel welcome.’

‘I have never met such a lovely and professional team of people. All are friendly, welcoming and value your input. Explain every process. Are there if you need support or have questions. A very positive experience and have been looked after so well. Thank you.’

‘The knowledge that I had access to a professional staff that were very supportive, specifically in the early stages of my illness. I felt reassured that I had an extra layer of medical support in between the normal consultant appointments. The staff were brilliant throughout.’

‘The nurses involved in my experience, particularly [two names removed] were extremely pleasant, polite, informative and easy to deal with. As a result, I would have no hesitation in taking part in other research.’

Logistics

Participants generally thought that the research was well organised and appreciated staff, where possible, arranging appointments to suit the participants’ needs e.g. around shift patterns.

‘Carried out in an orderly manner very professionally done. No problems quickly performed. Excellent.’

‘Appointments always on time.’

‘Flexibility of fitting appointments around shift pattern.’ 

‘Flexible with appointments and tried to accommodate.’

‘Appointments arranged to suit my availability.’

‘The research team has been flexible with me to allow me to attend my appointments/drop off my samples in between my patient visits.’

The coordination/ flexibility of the Research Nurse [Name removed] . Ensured timely swabs / bloods done, would visit offices to ensure this.’

What would have made your research experience better?

As in previous years there were some participants who felt that there wasn’t anything that could have improved their experience as it had been so positive.  Some of the participants’ responses included:

‘This experience has been excellent. I would be very keen to hear regularly about research studies.’

‘Every aspect has been well managed, it would be difficult to make suggestions to improve the experience.’

‘Nothing - 100% positive experience.

‘I have always had a positive experience with my team even throughout the pandemic therefore I really don’t see any faults with it.’

However, this wasn’t the same for everybody and once again common themes emerged when reviewing the comments received.

Accessibility

Many participants identified that if issues related to accessibility were improved, then their experience of participating in research would have been improved.  Comments were made about receiving reminders about appointments, the flexibility of these appointments and being able to attend sites nearer to home.  Some participants also thought they should have quicker access to tests and that accessing some sites could be improved e.g. signposting and the presence of reception staff.

‘Evening appointment.’

‘Having appointments available outside of working hours.’

‘Out of my working hours appointments.’

‘Reminders of appointments.’

‘We shouldn’t be waiting too long to have our bloods taken especially if it’s a booked appointment and the fact that you have already told the Receptionist that you have had to go back to work as soon as possible. Just a bit of consideration - to be seen during the appointment, 15 mins late fine but nearly an hour not acceptable.’

‘Easier booking of blood testing & free parking whilst undergoing the process.’ 

‘Having quicker access (priority) to blood tests rather than having to take a ticket and wait for up to an hour and paying for parking at the hospital (when only going for research).’

‘Getting access to the research site could be made easier e.g. reception staff.’

‘Clearer signs when onsite as you come out of the lift.’

‘If the treatment could have been carried out nearer home.’ 

‘Having the procedures closer to home.’ 

‘Being able to attend clinics at my local hospital rather than having to drive to [name removed] each time, with the timetable making it at the busiest time of the day for that facility.’

Updates and feedback about results

Participants were generally satisfied with the information they were given prior to taking part and when they first participated in the research.  

However, they did not feel they were updated during the course of the research and did not know how the results of the research would be disseminated.

‘Being kept updated about the study. I was given information when I started taking part, but nothing since.’

‘Greater provision of feedback on research progress and ultimate intended use of data.’

‘More written info re trial as study has been going on for just over nine years.’

‘If I could just be updated more about the findings of the study so far.’

‘More information, I've had nothing since the start, apart from the annual review with the oncology team.’ 

‘Some sort of feedback or info about where the research is going and results of the evidence or how it's informing care and treatment.’

Participant Experience

Some participants identified that their research experience could have been enhanced by a more comfortable and clean environment, more face to face contact with research staff, provision of refreshments and availability of car parking spaces and not having to pay for petrol and car parking.

‘Not having to pay for the parking during the time spent in hospital which did take up to 2-3 hours sometimes. 

‘I think our petrol and parking should have been reimbursed for the whole of the trial. Many people would have helped by volunteering but couldn't afford to. We were lucky we could.’

‘The parking situation at this hospital was so bad we nearly had to abandon my appointment.’

‘Not having to worry about finding a parking space each time I attend. Have to leave home at least an hour early to find one! Very frustrating.’

‘Air conditioning in the summer.’

‘Had the room (environment) been a bit cleaner and more friendly.’

‘Maybe a cup of tea and a biscuit.’

‘Being offered a drink before or after the injection rather than straight in and out.’

‘More face to face conversations.’

‘More contact with the research nurse during my stay in hospital.’

‘Probably speaking to a person rather than the same questions daily.’

‘I always find that having things explained by a person rather than reading copious notes is more helpful to me.’

‘I would have liked the research staff to be present at consultation follow ups.’

‘More frequent contact.’

‘If I could have been seen on the last few occasions rather than having a telephone appointment.’

Who completed the survey?

93% of respondents indicated that they had completed the survey themselves. The other 7% were completed with help from someone else or were completed by another person on behalf of the research participant.

Demographic Information

In addition to responding to questions about their research experience, participants were also given the opportunity to respond to two optional questions i.e. the year of their birth and their ethnicity.

Participant Year of Birth

Participant Ethnicity

Improvement Actions

All organisations supporting the delivery of PRES have access to their specific responses via the CRN WM PRES Dashboard.  Partner Organisations are encouraged to look at these responses and provide positive feedback to staff as well as identify areas for improvement.  

Having reviewed the PRES  responses from across the CRN WM there are two areas which show  improvement is required and are Network wide.  These two areas are:-

1) Keeping participants updated about the progress of the research.

2) Informing participants how they will receive the results of the research.

In addition to the above, the continuous improvement projects, in collaboration with the Study Support Service (SSS), will continue.  These include training SSS staff about PRES so they feel more confident to talk to researchers about PRES, feeding back  results to study teams to show the benefits of embedding PRES into research and including PRES as a service offering to researchers.  All of these projects are aiming to get PRES embedded in research at an early stage. 

Priorities for 2023-24

The three top priorities for PRES over the next year are:

- Increase the number of Partner Organisations delivering PRES

- Deliver the children and young people’s PRES

- Explore the opportunities to deliver PRES in the wider care and community settings

Conclusions

During 2022/23 the highest ever number of PRES responses was received and this is as a result of all those who helped in the delivery of PRES, offering participants the opportunity to give feedback on their experience.

Once again participants who did provide feedback had in the main a positive experience.  

We  would like to say thank you to all the participants who provided feedback on their experience and to all the research staff who supported the delivery of PRES during 2022/23.