CRN WM PRES Report 2021-22

Contents

Executive Summary

1,523 responses to the Participant in Research Experience Survey (PRES) were received from across the West Midlands.  This is the highest total of responses ever received.  Overall, the responses  were positive, reflecting that participants’ experiences of taking part in research were good.  Here are the  key findings from the PRES 2021/22 in the West Midlands:

• 92% of respondents strongly agreed or agreed that the information they received before taking part prepared them for their experience on the study
• 71% of respondents strongly agreed or agreed that they felt they had been kept updated about the research
• 79% of respondents knew/knew to some extent how they would receive the results of the research
• 90% of respondents strongly agreed or agreed that they knew how to contact someone from the research team if they had any questions or concerns
• 92% of respondents strongly agreed or agreed that the researchers valued their taking part in the research
• 96% of respondents strongly agreed or agreed that the staff always treated them with courtesy and respect
• 93% of respondents strongly agreed or agreed that they would consider taking part in research again

The comments that the participants made in the free text questions also supported the generally positive experiences of the research participants. There are however,  two areas that have been identified as the focus for continuous improvement during 2022/23. These are:

• participants being kept updated about the research
• how participants receive the  results of the research

Introduction

The 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 2021/22 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 Response Strategy 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.

We hope you find this report both useful and interesting.

Delivery of the PRES

As in 2020-21 the decision was made to promote the digital version of the survey.  Partner Organisations were provided with the link and the QR code for the survey, and guidance documents.  As the year progressed several organisations started to request a paper version of the survey.  This was due in part to research delivery staff seeing more participants face to face again and some participants being unable to complete the survey online for a number of reasons e.g. access to a smartphone or computer.

For those organisations who enquired about a paper version, they were informed that they could print off the PDF version of the survey for participants.  A number of paper surveys  were therefore received and this data added to the PRES dashboard.  

Responses by Site 

This table shows responses received from each of the participating sites.

Responses by Research Study

Responses were received from participants from 100 studies.  This table shows the 10 studies with the highest number of responses, which account for 85% of the responses overall.

PRES Results 2021-22

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 numbers shown are percentages.  Please note that as a result of rounding they do not all add up to 100% exactly.

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

It is good  to see that  92% 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.

I feel I have been kept updated about the research

When participants were asked if they felt they had been kept up to date about the research they were participating in only 71% strongly agreed or agreed.  There were many participants, nearly 30%,  who did not feel updated.  Given the responses to this statement, it is definitely an area where improvements could be made.

I know how I will receive the results of the research

Having agreed to participate in a research study, there were 21% of participants who indicated that they did not know how they would receive the results of the research.  It is important that participants, taking part or having taken part in a study, are provided with this information. This is an area where once again improvements can be made.

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 had questions or concerns with 90% strongly agreeing or agreeing with this statement.  Comments received from participants also supported this and they also commented on members of the research team readily answering questions and providing comprehensive information. 

The researchers have valued my taking part in the research

As a Network we are always aiming to increase awareness of research and encourage people to consider taking part in research. Therefore, it is really encouraging to see that the majority of  participants i.e. 92% agreed or strongly agreed that they felt  the researchers valued their taking part in research.  This is also something that is evident from some of the comments that participants made when identifying what was good about their experience.

Research staff have always treated me with courtesy and respect

Participants responded very positively when asked how they were treated by research staff.  96% agreed or strongly agreed that they were always treated with courtesy and respect.  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.

I would consider taking part in research again

93% of participants agreed or strongly agreed that they would consider taking part in research again.  This is really encouraging as it demonstrates that the majority of participants were sufficiently satisfied with their recent/current experience to consider taking part in another research study.

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

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

Who completed the survey?

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. 

‘The whole experience has been very positive. I’ve enjoyed taking part. All of the hospital staff have been fantastic and really made (the) experience. Always friendly, helpful, happy to chat and answer any questions. They made me feel very comfortable. It’s the little things sometimes like someone made me a cup of tea. They care and made me feel valued. I really appreciated that. They have a great team.’

Research staff

Overwhelmingly there were many positive comments made about the staff with participants commenting on the friendly, experienced and knowledgeable staff who demonstrated a caring approach to them.

‘The staff were always very friendly and professional.  When I rang to speak to the study team the information I was given was very comprehensive.’

‘The staff were very helpful and supportive, and explained everything well.’

‘Staff have all been supportive and informed us well about how the research works and how it will work for us.’

‘The staff involved were fantastic at making me feel my contribution was valued. Couldn't fault anything about my involvement from day 1 to the end.’

Reasons for taking part

Participants commented on the reasons that had led them to agree to participate in the research.  They readily acknowledged that they wanted to give something back to society, help the NHS and contribute to the development of future treatments and medicines.  Some of the participants were taking part in vaccine studies so felt very passionate about helping to fight Covid-19.

‘I felt that at some stage previously someone had done this ultimately for my benefit with the medication I take for my heart failure.  I therefore thought this was a beneficial thing to do, hopefully to help others.  I find that thought quite a positive force.’

‘The positive aspect of doing research is feeling that you're helping others to get the best possible treatment.’ 

‘The feeling that I was doing something to improve services in the future.’

‘I was able to help fight Covid-19.’

Logistics

Comments were also made about how well research studies were organised and that this had enhanced the participants' experience.  This included enrolling on the study, follow up appointments and feeling safe throughout the duration of the study.

‘Simple enrolment & follow up appointments. Team efficient & informative.’

‘Everything, it was efficient, productive, and I felt safe at all times.’

‘Well arranged for a convenient time and executed flawlessly.’

‘Easy to book appointments, I don't have to wait, there is guidance from research staff whenever needed, regular updates from the central study team, and researchers value my participation.’

‘Well organised and efficient.’

Communication

Participants were generally positive about the explanations that they were given about the research, including the purpose of the study and what it aimed to achieve and the reasons for the different stages of the research.

‘I felt I was knowledgeably informed about the  reasons for doing each part of the research and that my contribution was valued, both by myself and the research team. No continual participation was assumed.’

‘Very well explained, everything happened very smoothly, all good basically!’ 

‘Everything was explained and I was kept up to date the whole way through.’

‘I was given all the information necessary to know exactly what the research hoped to achieve.’

Health benefits

While taking part in the research, participants really appreciated the  information about their health that they were provided with, along with the increased monitoring of their health and follow up appointments.  Participants recognised this as a really positive aspect of taking part in research and many were also reassured by this.

‘Getting access to additional monitoring throughout covid.’

‘Kept me informed about my health which is not always available to me.’

‘Knowing I was continually being monitored.’

‘Extra follow up check ups following the operation.’ 

What would have made your research experience better?

There were some participants who felt that there wasn’t anything that could have improved their experience and in response to this question simply said:

‘I can’t think of anything.’

‘Nothing, all been fantastic.’

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

Updates and feedback about results

Participants generally felt that they were not always updated during the research, this included how the research was progressing, any preliminary results, dissemination of results of the research or being advised as to how and when they would find out about the results.

‘Knowing timescale for results.’

‘I have had no feedback at all from the research.’

‘Perhaps having some very basic results or trends observed by the research and how this could improve treatment for patients in the future.’

‘Would be keen to know how results are shared with participants.’

’It would be nice to know some of the results of  the research, or at least be told how I will be informed about what conclusions the study comes to. This is more for my own curiosity however.’

‘More information regarding results, it was a bit hit and miss.’

Accessibility

Several participants commented on issues related to accessibility including better signposting at sites and having research appointments at a site closer to home or at different times.

‘Happy the way things are but some signposts would have helped.’

‘Knowing how to get out of building.’

‘Not getting lost around the hospital site and general staff not knowing where the …… research department was.’

‘Closer to home.’

‘A closer research centre.’

‘Appointments available outside of normal working hours, either earlier in the morning or later in the evening.’

‘If my visits were able to be on the weekend.’

Participant experience

For some participants their experience could have been enhanced  by improved car parking both availability of spaces and not having to pay for parking, provision of refreshments and a more comfortable environment.

‘There could have been more refreshments available at the initial screening and vaccination as the length of the appointment teamed with my journey time meant I had little time to get food/drink before or after the appointment. Also some kind of background music or radio whilst waiting would make it a more comfortable environment.’

‘Cup of tea’

‘Somewhere to park a little easier’.

‘Parking help - the car parking is a total nightmare.’

‘Cheaper parking.’

‘Having parking/travel costs covered’

‘For parking and travel expenses reimbursed same day.’

‘The provision of free parking.  I had already donated my blood time and 25 miles of travel costs.’

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.  Some of the areas for improvement which are clearly site/study specific include signposting, car parking - availability of or payment for and provision of tea and coffee.   As these are not consistent across all sites/studies they  are not appropriate for a Network wide continuous improvement project.

Having reviewed the PRES  responses from across the CRN WM there are two areas which clearly show  improvement is required and are Network-wide.  Both of these areas are in the provision of information for research participants.  Participants were generally satisfied with the information that they were given prior to participating in the research.  However, this was very different for the following two areas:-

1. I feel I have been kept updated about the research.
2. I know how I will receive the results of the research.

These will be the focus of a continuous improvement project during 2022-23.

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

As in 2020/21 the highest number of responses received (91%) were from those participants identifying themselves as from a white ethnic background.  The 2021 census results are not yet available but the 2011 census shows that 8% of the West Midlands population is either Pakistani or Indian.  However, only 3% of the PRES responses were from those identifying themselves as Asian or British Asian.   This supports the need for the work the CRN WM is already undertaking to make research more diverse and inclusive across the West Midlands.

Conclusions

During 2021/22 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.

Participants who did provide feedback had in the main a positive experience.  They overwhelmingly praised the research staff for their courtesy, knowledge, professionalism and said that they valued their participation in the research.  There were areas around the provision of information to participants where improvements can be made and these will be the focus of a continuous improvement project over the next 12 months.

There was a good response to the digital survey but it became evident during the year that provision of a paper survey was also required.  Both a paper and digital version of the survey will be available during 2022/23.

Once again 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 2021/22.