Participant in Research Experience Survey (PRES) 2020-2021 West Midlands Regional Findings Report

Contents

Participant in Research Experience Survey (PRES) (2020 - 2021)
West Midlands - Regional Findings Report

 Dr Moe Shaikh

Patient and Public Involvement and Engagement Cross Cutting Theme Lead
(PRES 2020/21 Lead)
May 2021

Executive Summary

This report will demonstrate the key findings from the Participant in Research Experience Survey (PRES) 2020/21 in the West Midlands. The total number of PRES responses collected was 1,489. This is the highest number of PRES responses collected in the West Midlands, of which the majority (1,163) were online responses and 326 paper copies collected. In total 15 NHS Trusts out of 25 participated in the PRES (2020/21) across the West Midlands.

This report will be shared with all our key stakeholders; NHS Partner Organisations, study teams, and research delivery staff so that that they can understand where participant experience is positive and identify areas where improvements could be made.

Overall, the PRES 2020/21 was a positive experience for research participants in the West Midlands. 93% of research participants stated that they strongly agreed or agreed on being provided with all the information prior to taking part in a study. 89% strongly agreed or agreed on knowing how to contact someone from the research team if they had any questions or concerns. 88% strongly agreed or agreed on the researchers valuing them for taking part in research. 95% strongly agreed or agreed on research staff always treating them with courtesy and respect and 91% strongly agreed or agreed to consider taking part in research again. However, 21% said they did not know how they would receive the results of the research and 8% stated that they strongly disagreed and disagreed with being kept updated about the study. The latter two areas of being kept informed during the study and the sharing of results are areas which require improvement.

Researchers and study teams are encouraged to embed the delivery of the PRES intoresearch studies to ensure all participants are given the opportunity to share their feedback on their experience.

Despite the COVID-19 pandemic and the initial challenges of reducing face to face contact and maintaining social distancing, NHS Partner Organisations, study teams and research delivery staff supported the PRES in the West Midlands. Thank you to all of the participants who took part in a research study and gave their feedback by completing a PRES questionnaire. A big thank you also to all the research staff for delivering the survey and giving their participants the opportunity to share their important feedback. The PRES is only possible with the support of both these two important groups.

Foreword

Patient and Public Involvement and Engagement (PPIE) is an integral element of Clinical Research Network West Midlands activities and local and regional research. We have been involved with the development of an annual PRES for over six years now and we have witnessed its metamorphosis into a fully digital and age-tailored survey. The PRES Response Strategy Group meets regularly and comprises key staff from business intelligence, communications, research delivery, Primary Care and PPIE. This structure provides opportunities for in-depth analysis of results, actions and decision making that enables questions to be asked and proactive responses to be discussed and agreed upon. At all stages the patient and public view is valued and our involvement provides the West Midlands Research Champion Forum with information around patient experience of research that provides us with real data we can use in our own research activities as study members. Anne Devrell - Chair of the West Midlands Research Champions Forum and Lay Representative on the CRN West Midlands Partnership Gr 

Background

The Participant in Research Experience Survey (PRES) has been conducted annually by the Clinical Research Network (CRN) since the pilot in 2015/16. Prior to 2019/20 the survey was referred to as the Patient Research Experience Survey and was re-named to the Participant in Research Experience Survey (PRES) in 2018/19 to reflect the change in the remit of the NIHR to include public health and social care research (individuals who take part in research are typically referred to as ‘participants’ and may not necessarily be patients).

The PRES is a national survey carried out across the West Midlands region by the Clinical Research Network (CRN) West Midlands and NHS regional partners. The aim of the survey is to achieve two primary goals:

- To provide research participants with an opportunity to give feedback on their experience of taking part in research
- To identify ways in which research practices and processes could be improved for the benefit of participants.

Following consultation by CRN Coordinating Centre with the NHS Health Research Authority (HRA) in September 2019, it was confirmed that PRES is not research and does not require NHS approval before being conducted within health and social care settings (LCRN Contract Support Document CSD070, Participant in Research Experience Survey: HLO8, April 2020).

In addition, the PRES is conducted with responses from participants in studies on the NIHR CRN Portfolio and the suitability of the study for conducting an experience survey. This may mean the availability of a PRES version is adapted and suitable for the research context and participants.

Ever since COVID-19 hit the UK, people across the country have worked tirelessly together to make a difference through research. Clinicians throughout the NHS, research staff and over one million public participants have enabled the delivery of life-saving research at a pace never seen before.

During the 2020/21 COVID-19 pandemic, the CRN West Midlands Patient and Public Involvement and Engagement (PPIE) Team adapted the PRES and worked with our regional partners to ensure we targeted both vaccine and non-vaccine related research studies in the region. The CRN West Midlands PPIE Team established the PRES Response Strategy Group in 2020 with the aim of focussing on increasing the number of participant responses. This team included members from the CRN West Midlands Senior Leadership Team, Communications, Business Intelligence, Primary Care, Commercial Industry Team, the chairperson for both the Regional Research and Development Managers Forum and West Midlands Research Champions Forum and members of the PPIE Team.

The expertise of this group helped ensure learning from the NIHR Digital Conference (2019) was replicated for the PRES (particularly towards the PRES Google Data Studio Dashboard) and that research staff and lay members were involved and engaged in the process.

A decision was made for the PRES (2020/21) in the region to be solely digital. This was a result of the COVID-19 pandemic. The PRES Response Strategy Group agreed to roll out PRES with regional partners in an online format to ensure the safety of research staff and research participants was of paramount importance, and to minimise the risk of any possible cross contamination using a paper questionnaire, as well as adhering to Government guidelines of the time which were to minimise social contact.

Posters with an online link to the survey and QR codes were produced and shared for specific study teams and participating sites and a new Google Data Studio Dashboard was developed by the CRN Business Intelligence Team. The adaptation due to the COVID-19 pandemic also showed that an online PRES platform can be equally successful as a paper PRES questionnaire.

A small number of NHS Partner Organisations did request a paper PRES questionnaire and they were provided with a PDF version of the PRES questionnaire. PDF versions were downloaded, printed, shared and collected. University Hospital of Coventry and Warwickshire NHS Trust (UHCW) collected a small number of PRES paper PDF questionnaires and directly inputted them on the online platform. University Hospitals of Birmingham NHS Foundation Trust (UHB) collected the PDF paper questionnaire across the Trust and CRN West Midlands PPIE Team collected and helped with the data input of these questionnaires. Going forward, PRES will need to consider the roll out of both paper and online questionnaires as and when it is safe to do so and offer support to NHS Partner Organisations towards PRES data input.

The CRN West Midlands PPIE Team engaged continuously with all PRES participating sites i.e. meeting study/research teams, sharing resources across NHS Partner Organisations such as posters, PRES reminder slips and being involved in problem solving discussions and meetings to help support the delivery of PRES.

The PRES (2020/21) questions were provided by the NIHR CRN National Coordinating Centre with the options of including participant profile questions. This option was taken up by the PRES Response Strategy Group. The PRES (2020/21) questionnaire consisted of twelve participant expérience questions and two questions related to the profile of the participant i.e. ethnicity and age range. The PRES (2020/21) questionnaire.

This PRES Regional Findings Report will share feedback from the PRES (2020/21) and highlight the top ten NHS Partner Organisations and top ten studies in the region in accordance with PRES responses as well as explore common themes or suggestions derived from research participants. The purpose of this report is not to highlight the positives and negatives of a particular study or particular site as this information is available via the CRN West Midlands Google Data Studio ‘real time’ PRES (2020/21) Dashboard. Rather, this report will generalise the feedback of the PRES from across the region.

In total 15 NHS Trusts out of 25 participated in the PRES (2020/21) in the West Midlands. Staff capacity and clinical priorities during the pandemic are the main reasons why all NHS Partner Organisations did not participate.. PRES (2020/21) was also promoted within Primary Care services and in a residential care home setting in the West Midlands.

The NIHR national Portfolio studies saw 1,549,185 people taking part in research during 2020/21. In the West Midlands a total of 86,808 people took part in research which is 5% of the overall 1,499,595 recruitment figure. The total number of PRES (2020/21) responses collected was 1,489 (as of 31/03/2021) which is above 1% of the overall 86,808 recruitment figure. Please click on the following link to access the CRN West Midlands Google Data Studio ‘real time’ PRES (2020/21) Dashboard.

1,489 is the highest number of PRES responses collected in the West Midlands of which the majority (1,163) were online responses and 326 were paper copies. In 2019/20 we collected a total of 946 PRES responses (please note the PRES questionnaire for 2019/20 does not replicate the same questions as the PRES 2020/21 questionnaire). This indicates that the PRES can reach a high number of research participants and work towards a vision whereby every single research participant in the region is offered the opportunity to share their experience.

PRES (2020/21) Findings

Respondents were asked to answer a series of questions to indicate how they found their research experience, selecting one response from those provided using a linear scale. This section will outline the responses to those questions and provide a brief commentary on any noteworthy findings.

PRES responses by site

The purpose of highlighting the top three participating sites and top three studies for the PRES (2020/21) is not to undermine the efforts of all participating sites and study teams in the region. The CRN West Midlands PPIE Team acknowledges the challenge of supporting the PRES during the COVID-19 pandemic. Rather, the rationale of demonstrating data in this manner is that the learning from the top three participating sites and studies in relation PRES delivery, promotion, questionnaire distribution, collection and input can be shared across the region. Examples from the top three participating sites were regularly shared during 2020/21 via the West Midlands Research and Development Managers Forum and the CRN WM PPIE Team such as PRES information slips, email templates, posters etc.

This section shows the sites which have provided the most PRES (2020/21) responses. The PRES responses by site are as follows:

The highest participating site was University Hospitals Birmingham NHS Foundation Trust (UHB). UHB provided 420 PRES responses out of the overall total of 1,489. University Hospitals Coventry and Warwickshire NHS Trust (UHCW) provided 360 responses and Sandwell and West Birmingham NHS Trust provided 197 responses.

PRES responses by studies

This section shows which studies have provided the most PRES (2020/21) responses. The top three PRES responses by studies is as follows:

The study which collected the most PRES (2020/21) response was the SIREN study (537). The second highest study to collect PRES responses was the COV002 study (270) and third highest study to collect PRES responses was the ADD-ASPRIN study (154).

It is important to point out that the SIREN study was staff focused. Since the onset of the pandemic, interest in antibodies and antibody testing has been huge. Antibodies are part of the human body’s immune response to an infection. They are a special protein which seeks, finds and attaches itself to an unwelcome invader, such as COVID-19. After the immune system has flushed out a cold, or cough, or COVID-19, these antibodies do not disappear. Testing for the presence of COVID-19 antibodies can tell us if someone has had the virus before and advance our understanding of the spread of the virus. Collecting this information helps towards better understanding about antibodies, about COVID-19 reinfection more generally and the more information research teams have at their disposal to help decision-makers control the spread of the disease.

Gathering this information was the overarching aim of the SARS-CoV-2 Immunity & REinfection EvaluatioN (SIREN) study when it was established as a National Institute of Health Research Urgent Public Health study in June 2020. To develop this understanding, it was decided that health workers up and down the country; doctors and nurses, porters and cleaners would be the main participants of the SIREN study.

The COV002 study collected information around how well people of all ages can be protected from COVID-19 with a new vaccine called ChAdOx1 nCoV-19. It also provides valuable information on safety aspects of the vaccine and its ability to generate good immune responses against the virus. The study enrolled older adults (56-70 years, then 70+ years) before expanding to large numbers of adults across all ages (18+ years). Following this the study team will also assess the vaccine in a small cohort of children (5-12 years). In total they intend to enrol up to 5,260 volunteers.

The Add-Aspirin study is a large randomised clinical trial, which is taking place in the UK, Republic of Ireland and India. It will recruit 11,000 participants to help find out whether regular aspirin use after treatment for an early stage cancer can prevent the cancer from coming back and prevent deaths.

Findings - Likert Scale responses

The following sections show the views and experience of all research participants. All the following responses are based using a likert scale of 1 - 5 (1 = strongly disagree and 5 = strongly agree) unless otherwise stated.

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

1,387 (93%) of research participants who completed the PRES (2020/21) stated that they strongly agreed or agreed to being provided with all the information prior to taking part in a study. However, 36 (2%) stated that they strongly disagreed or disagreed with being provided with all the information prior to taking part in a study.

I feel I have been kept updated about the research.

1,070 (71%) of research participants who completed the PRES (2020/21) stated that they strongly agreed or agreed on being kept updated about the study. However, 131 (8%) stated that they strongly disagreed or disagreed with being kept updated about the study.

I know how I will receive the results of the research.

Question three offered a ‘Yes/No/To some extent’ option only. The majority of research participants 1,142 (76%) were informed on how they were to receive the results of the research. However, 327 (21%) of research participants said they did not know how they would receive the results of the research.

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

1,339 (89%) research participants who completed the PRES (2020/21) stated that they strongly agreed or agreed on knowing how to contact someone from the research team if they had any questions or concerns. However, 57 (3%) stated that they strongly disagreed or disagreed with knowing how to contact someone from the research team if they had any questions or concerns.

The researchers have valued my taking part in the research.

1,324 (88%) of research participants who completed the PRES (2020/21) stated that they strongly agreed or agreed on the researchers valuing them for taking part in research. However, 29 (1%) stated that they strongly disagreed or disagreed on the researchers valuing them for taking part in research.

Research staff have always treated me with courtesy and respect.

1,416 (95%) of research participants who completed the PRES (2020/21) stated that they strongly agreed or agreed on research staff always treating them with courtesy and respect. However, 22 (1%) stated that they strongly disagreed or disagreed on research staff always treating them with courtesy and respect.

I would consider taking part in research again.

1,357 (91%) of research participants who completed the PRES (2020/21) stated that they strongly agreed or agreed to consider taking part in research again. However, 29 (1%) stated that they strongly disagreed or disagreed on considering taking part in research again

What was positive about your research experience?

This question provided the option for research participants to share any comments which was positive about their experience of being involved in a study. The main positive themes include:

- Friendly/helpful and approachable staff
- Being shown gratitude and respect
- Good research participating experience
- Communication
- Altruism
- Location
- Study/Test Results

What would have made your research experience better?

This question provided the option for research participants to share any comments which was negative about their experience of being involved in a study. The main themes which would make the research experience better include:

- Free parking and support with travel expenses
- Refreshments
- Location/time of research appointment
- Study/Test Results
- Communication
- Clear directions to research location
- Study/Test specific logistical issues
- Nothing can be improved!

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

Question ten offered a list of four timeline options and a ‘not sure’ option. The following table shows how long research participants in PRES (2020/21) have taken part in a research study:

The majority of PRES respondents 581 (39%) said they had been taking part in research for less than three months.
546 (36%) of PRES respondents said they have been involved in research for at least three months but less than a year. 213 (14%) of PRES respondents said they have been involved in research for at least one year but less than three years.

Is this the first research study you have taken part in? - Yes/No

Question eleven offered a Yes/No option only. 1,248 (83%) of research participants stated it was the first time that they have taken part in a study.

Who completed the survey?

Question twelve provided three options on who was completing the PRES (2020/21) questionnaire. The following table shows who completed the questionnaire. 1,473 (98%) of people completed the PRES questionnaire themselves.

What was your year of birth?

The age group for the majority of PRES (2020/21) responses is the 50-54 year olds, second highest age group are the 55-59 year olds and the third highest age group are the 70-74 year olds. The age groups with the least PRES (2020/21) responses are the 18-24, 80-84 and 85+ year olds. The table below shows that the majority of PRES respondents' ages ranged from 30 to 74.

What is your ethnic group?

This question was added in the PRES (2020/21) and was based on the ethnic group category used in the Office for National Statistics (ONS) Census 2011. The highest ethnic group participating in the PRES (2020/21) is White English, Welsh, Scottish, Northern Irish or British (86%). The second highest ethnic group belonged to Asian or Asian British (6%).

The third highest ethnic group belonged to Other White Background and Indian (both 3.4%). The lowest ethnic group participating in PRES (2020/21) are members from the Any Other Black, Black British or Caribbean background and Gypsy or Irish Traveller (0%) ethnic group. The table below shows count and percentage of all the ethnic groups of research participants in the PRES (2020/21):

Data from the Census 2011 shows the population of the West Midlands was 5,601,847 (ONS, Census 2011). The proportion of respondents identifying themselves from a white ethnic background is over 82% in the West Midlands (ONS, Census 2011) . In the PRES (2020/21) the white ethnic group categories represented over 91% of the 1489 overall total. The ethnic minority population in the West Midlands is 17.4% (ONS, Census, 2011).

The overall number of research participants from ethnic minority groups in the PRES (2020/21) equates to 9% of the 1,489 overall total. Clearly, there are disparities on both accounts; the number of people from ethnic minority backgrounds is lower than the average of the population in the region and members from the White ethnic group clearly seem to be over-represented. This indicates the need to promote research and the PRES across all ethnic groups in the West Midlands. The recent introduction of the NIHR Learn online course Increasing Participation of Black, Asian and Minority Ethnic Groups in Health and Social Care Research will be promoted across partner organisations in the region and particularly aimed towards research delivery staff to help better understand cultural competence and safety and help increase local/regional population representation in PRES.

 Findings - Free Text responses

In addition to the responses outlined above, respondents were given the opportunity to answer two questions and share their views on:

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

All free text responses were themed into categories using a qualitative data thematic analysis process. A total of 2,114 comments were shared by PRES respondents. Therefore, only a small selection of comments have been shared in this report under each theme to help provide an idea on some of the views shared. For all comments related to participating sites and/or studies please access the comments section on the CRN West Midlands Google Data Studio ‘real time’ PRES (2020/21) Dashboard

A total of 1,266 comments were collected in relation to what the PRES respondent said was positive about their research experience. The key themes are as follows:

Friendly/helpful and approachable staff

- Friendly and helpful staff. Nothing too much trouble and happy to answer all questions.
- The first thing was everyone was sincere with me because I got the feeling which gave me a boost when I was at low with my illness.
- I was very anxious about having the procedure and the possible results, all of the staff were fantastic. They talked me through everything, put me at ease and could not have been more helpful.

Being shown gratitude and respect

- Staff have always treated me with courtesy and respect and I feel I have been given very good treatment.
- I was made to feel like a valued individual by the research team and the friendly nature of the people involved made it easy to become fully involved with the trial.
- The fabulous staff! Everyone we met or spoke to on the phone was so understanding and caring. You could sense the real passion for the research throughout the whole team but this was balanced by a genuine care and concern for the individual patient (me). I never felt like just another person on the list.
- I was treated as if I was the only person taking part. Made me feel very special. Overall a painless experience.

Good research participating experience

- The team is wonderful. Kept me entertained. The process is slick although I understand they are possibly paddling like ducks under water, they looked after me very well.
- Very organised & efficient.
- Good updates from the research team, thankful for contribution. Easy to book appointments, convenient times and accessible on site. First research experience, would do again.
- This is the first trial I have taken part in and I am only six months in. However the whole experience has been very professionally handled so far.
- It was a new experience for me and found the whole process easy, staff friendly and helpful.

Communication

- Research staff have been extremely accommodating and helpful in relation to Covid restrictions. Telephone communication has been valuable.
- Very helpful and communicative staff. They went out of their way to get in touch with me with advice. Thorough and welcoming. Patient with my electronic illiteracy. Thank you.
- I was made to feel an important part of an essential research project. Staff were, without exception, friendly, excellent communicators and answered any of my queries honestly and clearly.
- The staff explained exactly what would happen, in what order and how long it would take. They explained everything as they were doing it too. Taking part in research gives me hope.
- Everyone has taken their time to answer any of my questions, things were explained in detail where needed. I was fully informed at all times. The whole team was always professional and at the same time extremely caring and compassionate. Thank you for giving me the chance to be a part of this trial and letting us find hope when we were thinking of giving up.

Altruism

- Feeling I was doing something positive and the encouragement by the staff. They were so supportive and courteous and made me feel like I was a “hero”.
- I felt that I was helping to make a difference and assisting in finding a cure/drug that would ease this current pandemic.
- Feeling like as a collective we will make a difference to understanding the pandemic and antibodies
- The reason I took part was to try and give something back after the NHS took great care of me for my cancer operation and chemotherapy. - - The NHS has been brilliant.I feel positive about the research experience as the care I received for prostate cancer was outstanding at every stage and I feel that by taking part in the trial I am in some way helping future treatment delivery for others.

Location

- It has all been managed locally, and because it is in my workplace and during my normal hours there really hasn't been anything to moan about.

Study/Test Results

- The lovely thank you letter and Covid results.

A total of 848 comments were collected in relation to what the PRES respondent said would have made their research experience better. The key themes are as follows:

Free parking and support with travel expenses

- Transport and parking costs refunded.
- Payment of expenses - if only car parking. 22 miles each way and about £5 per time parking is a lot when you are on a pension.
- Parking permit!
- I have thoroughly enjoyed working with both the research nurses and the consultants. Absolutely no complaint. However I have to ask why a research programme was not responsible for parking costs. I still believe this to be wrong, especially the waiting times and journey times.

Refreshments

- Biscuits and coffee.
- Having decaffeinated drinks ( herbal tea) available.

Location/time of research appointment

- If the research team could have visited us in the community it would have eased disruption to the working day and would have increased the take up of the research project in our team.
- To be able to access the centre during out of working hours i.e after 5pm.
- Ability to access research at different geographical locations.

Study/Test Results

- Preliminary results update, number of participants, progress made, expected completion and publication of results.
- Knowing how research results will be communicated after the study.
- To know more of the outcomes of the research ( I appreciate this can take time).
- We are naturally inquisitive and it would be nice to hear our outcome even if this is years down the line.
- I'd like to know more about how the study results have contributed once the study is completed.

Communication

- I only met the research team at the start of the study. It would be useful to have an update to see how the study is progressing.
- Being kept updated about the research. An example would be a newsletter sent out.
- It would be nice to have a website or newsletter so I could keep up with how the trial is going.
- To know if the programme is finished or still ongoing.
- Perhaps an annual update as to how the research is developing.
- Perhaps a mini update as to how the research is going.

Clear directions to research location

- Clearer signing at site. Allocated car park spaces. Expenses reimbursed.
- An interior plan of the hospital showing lifts and stairs.
- Clearer directions to find the room in the hospital prior to first visit!

Study/Test specific logistical issues

- Clearer instructions and process for booking appointments.
- The ability to complete forms online would be useful.
- Some kind of voucher to say thank you.
Being paid!
- I felt some of my visits to the hospital could have been done via a video consultation.
- The paperwork required to partake in the study was quite overwhelming. Online surveys, like this one (PRES 2020/21), would have been better.
- More time to make an informed decision.
- A free pen.

- Nothing can be improved!
- Nothing, I was really impressed with the set up considering this was very early on into the research study and how quickly the team had been pulled together.

- Nothing, this is my first experience of a trial and it's been very positive.

- It has been first class and very informative.
- The way it runs now is easy and simple so it couldn’t be any better, I think.
- This is my first time as a participant - though I have done academic research (non medical) previously. I really rate the whole process - ethically and logistically - there is nothing to fault or improve. Just maintain the standard :)

It is important to note that many of the responses and themes are influenced particularly by one study; the SIREN study which provided the majority of PRES responses and was a staff based survey collecting blood samples to check for antibodies in those members of staff who had tested positive for COVID-19.

Comments selected in this report are chosen to share a broad range of views and experiences. Study and site specific comments will need to be accessed using the CRN West Midlands Google Data Studio ‘real time’ PRES (2020/21) Dashboard. To help study teams and participating sites explore PRES (2020/21) data, the CRN West Midlands PPIE Team and Business Intelligence Unit have produced a PRES Feedback Support Guide. 

Conclusion and Recommendations

The PRES (2020/21) has clearly shown that a digital only PRES can be equally successful as delivering a paper based PRES in the West Midlands. A digital only PRES can be the ideal way forward with the option of providing a paper PDF PRES questionnaire for partner organisations who prefer to use a paper format to distribute and collect. A digital-only PRES significantly reduces time during the data input stage and therefore enables an accurate real-time count on the number of PRES responses. In addition, providing a digital only PRES and a PDF paper PRES version for partner organisations to download is efficient as it reduces printing costs and the cost of a Royal Mail Business Reply Post account and postage. However, support towards postage fees and data input for NHS Partner Organisations will need to be considered.

The COVID-19 pandemic meant many non-vaccine related research studies which would have been in delivery were paused. Therefore, matching the number of PRES responses and research activity for a specific study and Trust was challenging. Matching the number of PRES responses to the recruitment of research participants for studies at an organisation should be considered for future PRES.

In addition, the PRES is not simply about collecting research participant experiences, rather how this experience shapes the way research is promoted and delivered in the West Midlands. Therefore, PRES needs to continually share research participant experience information back to organisations and study teams and log what discussions and possible changes have occurred as a result of sharing this invaluable information. The CRN West Midlands PPIE Team developed the Research Participant Experience Survey Change Improvement Form in 2019/20 and this needs to be reviewed and updated during June/July 2021 in collaboration with NHS Partner Organisations and adapted towards a new ‘PRES Quality Improvement Form’ (2021/22) to ensure the cycle of learning from PRES is continuous within organisations and specifically towards improving the culture of research as a positive experience for all research participants.

This in turn would mean bringing the learning and discussions of PRES towards earlier stages of each research and helping explore how this information can be useful to develop and deliver research, rather than viewing PRES simply as a latter research stage process and research participant experience evaluation tool.

Further information

Once again our continued thanks go to all our partners for their assistance in delivering the PRES and importantly to all the research participants who took the time to provide us with their invaluable feedback. If you have any questions or require any further information please contact:

Dr Moe Shaikh
Patient and Public Involvement and Engagement Cross Cutting Theme Lead (PRES 2020/21 Lead)
NIHR Clinical Research Network West Midlands
mohammed.shaikh@nihr.ac.uk