CRN East Midlands Participant in Research Experience Survey 2021-22 Report

Contents

Introduction

The Participant in Research Experience Survey (PRES) provides a mechanism for research participants to give feedback based on their experience. Conducted by the National Institute for Health and Care Research (NIHR), it is carried out to help continually improve the experience that people have when taking part in research.

The PRES is delivered by each of the 15 Local Clinical Research Networks (LCRN) in England. Each LCRN works with partner organisations to deliver the PRES. All respondents across England are asked to respond to the same questions, and the survey collects information to enable the anonymous responses to be attributed to both research site and study in order to maximise their value.

This report will provide an overview of the 2021/22 PRES in the East Midlands region, which covers Derbyshire, Leicestershire & Rutland, Lincolnshire, Northamptonshire and Nottinghamshire. It will set out the process that was followed, the results and responses that were received, and the subsequent actions that have been taken in response to both the delivery process and the findings.

We would like to place on the record our thanks to all of the organisations across the East Midlands who helped us to deliver the PRES. As a result of the ongoing COVID-19 pandemic, this required a great deal of flexibility and determination to incorporate the PRES into research delivery, and we are grateful to our partners for their willingness to work with us to deliver this important project.

We would also like to thank all research participants who took the time to complete the PRES. The responses have helped us to understand more about what research is like from a participant perspective, including the areas in which we can make improvements, and provided us with results that help show research staff across the region how much their hard work and support for participants is valued.

We hope that you find the report useful. If you would like to find out more about the PRES, or our work more widely, please visit our CRN East Midlands homepage or contact us using the details below:

Telephone: 0116 258 6185

Email: crneastmidlands@nihr.ac.uk

Executive Summary

The PRES includes a number of questions that enable participants to respond to a series of statements. Taken as a whole, these show that research in the East Midlands is viewed overwhelmingly positively by participants. The key findings are as follows:

The key findings from the 2021/22 PRES in the East Midlands are as follows:

• 93% of respondents strongly agreed or agreed that the researchers valued their taking part in the research
• 91% of respondents strongly agreed or agreed that the information they received before taking part prepared them for their experience on the study
• 74% of respondents strongly agreed or agreed that they felt that have been kept updated about the research
• 78% of respondents said that they knew, or knew to some extent, how they will receive the results of the research
• 89% of respondents strongly agreed or agreed that they knew how to contact someone from the research team if they had any questions or concerns
• 98% of respondents strongly agreed or agreed that research staff had always treated them with courtesy and respect
• 95% of respondents strongly agreed or agreed that they would consider taking part in research again

These results are backed by the content provided in response to the free text questions, which emphasised that the overwhelming majority of research participants view it positively and as something to celebrate. However, there are a number of areas where there is clearly need for further improvement to provide participants with the best possible experience, as will be explored throughout this report.

Distribution of the PRES

As in previous years, we worked closely with partners to provide as many participants as possible with an opportunity to take part in the PRES. The broader picture, including the ongoing COVID-19 pandemic, made this challenging; however, we are pleased to see an increase in the number of partner organisations involved in delivering the PRES compared to the previous year, and we hope to increase that further in the year ahead.

As a result, whereas during 2020/21 the PRES was only incorporated into a small number of Urgent Public Health research studies, during 2021/22 we were able to offer it to participants across a much wider range of studies. This makes the results much more valuable in extracting areas of improvement at regional, site and study level, and is a move towards our broader long-term aspiration of providing every research participant with an opportunity to complete the PRES.

The PRES was provided to participants to complete either using a paper survey, or digitally via the Typeform platform. One challenge that we identified was the collection of site and study data. Sometimes this section of the survey was not completed either by the participant or a member of staff, which meant a significant amount of staff time was spent to try and link the survey to site and study retrospectively, or, where this was not achievable, the survey could not be attributed and therefore the value of the response was lessened.

In order to try and overcome this and develop an approach that was easier for both staff and participants, we worked on a pilot with Nottingham University Hospitals NHS Trust. This pilot involved the creation of bespoke QR codes and URLs (links) for site and study combinations, so that when used, the answers to those questions were automated and did not need to be manually entered by either a member of staff or the participant.

This pilot quickly proved to be effective, improving the quality of the data that we received, and reducing the burden on staff and participants when taking part in the PRES. The success of this is reflected in the number of responses received from the trust, which saw a significant increase at the point at which the pilot was adopted.

As a result of this pilot, we have begun to offer the creation of bespoke QR codes and URLs for site and study combinations to all partners across the region, and we hope that this approach can increase use and successful completion of the digital PRES.

Responses by partner organisation

Responses to the 2021/22 PRES were received from the following partner organisations:

Responses by research study

During 2021/22, we received responses to the PRES from participants in 115 different research studies. This is an enormous increase on the previous year (8 studies), and reflects that the PRES is again becoming business as usual following the worst of the COVID-19 pandemic. The nature of the distribution of the responses means that a small number of studies received a high number of responses, with a much larger number of studies receiving a small number of responses. This is reflective of the picture at a national level and poses a challenge as to how we can increase the number of responses across all studies to maximise their value.

Results

The following section will provide a more detailed look at the responses received to each of the attitudinal questions contained within the PRES, including contrasting the results to the previous (2020/21) PRES year. All numbers are expressed as percentages, but as a result of rounding in some circumstances these may not add up to 100% exactly. It should also be noted that not all participants who were invited to complete the PRES did not, nor was it offered to all research participants; therefore the results reflect the attitudes of PRES respondents rather than the views of research participants as a whole.

The researchers have valued my taking part in the research

The vast majority of research participants feel that their involvement in research is valued, and there is little change in the responses compared to the previous year. Many participants used the PRES to tell us about their positive experience with research staff in particular, and this is evidenced by the responses to this question. There still remains room for improvement, however, as all participants should feel that their commitment to research is valued.

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

Broadly unchanged from last year’s results, the majority of participants state that the information that they receive before taking part in research prepares them for their experience. However, there are still a number of participants who do not believe this to be the case, and it is important that as a result community we continue to develop and improve the information given to participants before they begin their study journey.

I feel I have been kept updated about the research

Whilst the majority of participants do feel kept up to date about their participation there is room for improvement, and this ties into one of the common themes that we see across the improvement suggestions that will be covered in more detail later. The numbers are broadly comparable to last year, but there is an ongoing challenge to ensure that people taking part in research can be active participants, and that includes ensuring that they are provided with clear and concise updates where possible.

I know how I will receive the results of the research

There has been a significant (9 percentage point) rise in the number of people stating that they do not know how they will receive the results of their research, which is concerning. We know from the PRES in this year and previous years that there is an ongoing need to ensure that participants are provided with the results from the research that they have participated in, but as this finding demonstrates, there is still significant work to be done in this area. This finding was reiterated during the PRES improvement suggestions that we received, and poses a challenge to the research community to ensure that we can make progress in this area.

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

There has been a small decrease in the number of people stating that they know how to contact someone from the study team, which is an area that needs to be addressed. Part of this challenge, as illustrated in the responses to the free text questions, includes making sure that people have different ways to contact research teams where possible, including out-of-hours contacts for studies where the need for that type of interaction may arise.

Research staff always treated me with courtesy and respect

The positive responses to this question are unsurprising, given the comments that are provided about research staff by participants. However, treating participants with courtesy and respect should be the bare minimum, and we know that research staff will want to continue to make progress until all of the responses to this question are positive. It is also important that, where possible, research teams try to understand what issues could have led to a negative response to this question, taking any possible actions where possible to help produce more positive responses in the future.

I would consider taking part in research again

This result, which in some ways can be seen as a cumulative reflection of the other responses provided, continues to be positive, with the vast majority of participants stating that they are open to taking part in research studies in the future. The challenge that arises is to turn this enthusiasm and positivity into action, ensuring that people willing to take part in research  - either as a returning participant or as someone new to research - are provided with the information and support to enable them to take part in future studies.

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

The contract to the previous year in this question reflects the type of studies delivering PRES. In 2020/21, all responses in the East Midlands were from Urgent Public Health research studies into COVID-19, which explains why the vast majority of participants had been involved in their study for less than a year. The PRES responses for 2021/22 are more representative of the broader range of NIHR research studies, and seeing this data is a positive indicator that the PRES is again being offered to more participants across different types of research.

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

In light of the responses to the previous question about length of time in the study, it is perhaps surprising that the proportion of respondents stating that it is their first research study as a participant is unchanged from the previous year. However, it remains positive to see that in this year, as in the previous year, one-in-five participants has returned to take part in at least a second study.

Who completed the survey?

Whereas during 2020/21 nearly all responses to the PRES came from the participants themselves, this year sees an increase in the number of people provided with support to complete the survey. Whilst this in itself does not influence the findings from the PRES, it is against a positive indicator that more participants across a broader range of studies are being invited to complete a PRES.

What was positive about the research experience?

In addition to being asked to respond to a series of statements, respondents were also asked to answer a free text question asking what was positive about their research experience. Whilst responses to this varied by site and according to the type of study, we have identified a number of key themes that were common across responses received in the East Midlands.

Engagement with staff

Many respondents used this section to comment on the positive experience that they had with research staff. This included praising staff for their professionalism and expertise, and also the friendly, welcoming environment that they created for participants. Staff were celebrated for their knowledge and ability to answer questions in ways that put people at ease, the efficient research delivery processes that they implemented, and the quality of the care that they provided at every step throughout the research process. In addition, staff were praised for their warmth, dedication and commitment to making participating in research as simple and smooth as possible. 

Logistics

Research participants were eager to identify areas of the research process that they felt worked well and made their participation easier. This included the use of digital processes where possible and appropriate, such as the ability to book appointments via online systems. People taking part in research were also keen to praise the ease with which they could contact staff should they have any questions or concerns, and there was a general sense that, for the most part, measures had been put in place to make participation straightforward and simple.

Health benefits

Some participants used this question to outline the benefits of taking part in research. This included access to additional appointments, such as regular scans, and the ability that this provided to have more conversations about health concerns and considerations. Whilst the level of additional support received did vary according to the type of study, it is notable that many participants identified the added value that being a research participant provided to them.

Reasons for participating

In addition to the health benefits associated with being a research participant, a number of people who completed the PRES detailed their motivations for taking part in a study. Included within these were earlier access to a vaccine - important during the ongoing COVID-19 pandemic, and the ability to trial treatments before they were introduced for wider use. A number of participants also cited the community side of research, highlighting that for them, taking part in a study provided a way to meet other people who were likely to have similar health situations.

Impact of research

Many research participants wanted to convey that they were taking part in a study because they wanted to make a positive difference to society. Aspirations included that research could help develop new treatments that could help patients and people more widely, and that participation in a study now could help future generations. In addition, participants were eager to be part of something that matters, reflecting the broad benefits that research offers to society. 

Level of involvement

Within the feedback received, there is a clear demonstration that participants want to be active participants within research, and want research to be a process that they are part of rather than something that is done to them. Researchers were praised for providing participants with space to ask questions and providing answers to them in language that was easy to understand. Participants were also keen to highlight that their input was listened to, and as a result their experience was improved.

Improvement suggestions

Respondents to the PRES were also able to offer their suggestions about what changes would make their research experience even better. For many of these suggestions, the comments are of greater value when looked at alongside the site and study to which they correlate. There are, however, a number of common themes that are applicable to different types of research across the region.

Communications

Participants were keen to highlight communications as an area that could be improved with research. This included a better understanding of the different ways and methods to contact the study team, the ability to contact staff out of hours, and the use of ongoing communications and interactions to provide information about what is next in the study process.

Updates and feedback

Building on the need for improved communications, participants were keen to highlight that they want to be the first to know about any key study developments, such as findings about the effectiveness of treatments. Suggestions for this also included an increase in the frequency of communications, to ensure that participants felt that they were being actively engaged throughout the study process.

Logistics

Participants were also keen to highlight the improvements to the logistics of research delivery that would make their involvement in research easier. Common suggestions included the use of consistent locations where possible to make it easier for people to attend appointments, improved digital functionality to simplify booking processes and improve engagement for both staff and participants, and to make efforts to reduce waiting periods for participants where possible.

Accessibility

There is a need to make sure that taking part in research is as accessible and participant-friendly as possible. Suggestions for achieving this aim included improving the signage used at sites to make it easier for participants to find appointments, simplifying the language used within documents, and making sure that where feedback is provided to participants it is done so in lay terms that can easily be understood.

Participant experience

There were a number of suggestions about measures that could be introduced to improve participant’s experience, such as providing them with refreshments which we know from previous years has made a difference to people’s perceptions of research. In addition, participants added that receiving payment for taking part in a study or having access to free parking would be welcomed. We know that these are not always practical, but it is important for research sites and studies to consider steps to thank and reward participants where possible.

Appointments

Participants were also keen to improve the options available for them with regards to both booking and attending appointments. This included the possibility of booking appointments digitally, and receiving reminders about appointments via text or email. Where possible, participants would also like to attend appointments outside working hours.

Demographic data

In addition to asking participants to provide us with insights based on their experience of research, the PRES also includes some questions about demographics to try and help us to better understand the profile of research participants. Whilst this cannot be said to be an accurate reflection of the demographics of research participants in the East Midlands as a collective, it is at least informative and provides us with further evidence that there needs to be significant activity to improve diversity and inclusion within research.

Participant decade of birth

As in the previous year, PRES responses come from participants from a broad range of different ages. There has been a slight increase in the proportion of respondents aged 70+, which again is a positive sign that more participants involved in a range of studies are being invited to complete the PRES, when compared to the previous year.

Participant ethnicity

As the responses to this question highlight, there continues to be a need to improve diversity and inclusion within research, and to ensure that people from communities that have been under-served by research are provided with information and opportunities to take part. This issue is a priority for NIHR, and we are exploring what steps we can do within our region to improve both the diversity of research participation, but also within the PRES. Work in this area includes the scoping of a project to explore whether we can provide the PRES - or a variation of it - in different languages to make completing it easier for people across our region.

Conclusions

The responses to the PRES demonstrate that for the vast majority of participants, taking part in research is an enjoyable and rewarding experience. Whether it is interactivity with research staff, feeling a sense that they are contributing to future generations, or accessing information and ways to improve their own health, participants feel that they are getting something back from their research journey.

Research staff in particular should be pleased to see their work celebrated repeatedly by participants, many of whom go out of their way to stress both the professional and personal interactions that they have with staff delivering studies.

At a regional level, we are pleased to see an increase in the number of partners delivering the PRES, and the number of studies for which responses have been received. This is a strong step forward after the PRES was truncated by the COVID-19 pandemic last year, and we hope that we can continue the process of normalising PRES delivery further over the coming year.

There are a number of improvement themes that can be drawn from the PRES, both from the comments provided by participants and within the data itself. The challenge falls to the research community to make progress in the key areas highlighted to ensure that we can continue to improve research, and where possible to develop processes to better reflect participant’s needs.

We also identify, once more, the need to improve diversity and inclusion within research. There are a number of exciting projects taking place across the East Midlands that are aimed at improving participation amongst under-served communities, and we hope that these initiatives and the learnings from them will be reflected in PRES data in the future.

Finally, we want to reiterate our thanks to all of the research staff and participants who have taken the time to support the PRES project. This is an important project that aims to help us improve research and learn from people’s experiences, and we are grateful to everyone who has worked to deliver the PRES in the East Midlands.

We hope that you have found this report useful and we look forward to continuing to grow and develop the PRES in our region.