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2020/21 CRN North Thames Participant in Research Experience Survey report

Contents

Version 1.1 June 2021

Compiled by Christine Menzies
Patient and Public Involvement and Engagement Manager, CRN North Thames

Contents (see panel for clickable links)

Acknowledgements
Introduction
Results
Discussion
Impact examples
Next steps
Appendix A - PRES Leads at each participating site
Appendix B - Adult Survey
Appendix C - Children’s 0-6 years survey
Appendix D - Children’s 7-12 years survey
Appendix E - Children’s 12-15 years survey

Acknowledgements

All participants who took the time to complete the survey.

R&D and clinical research staff involved in supporting the PRES 2020/21.

Alkesh Patel, CRN NT Finance Manager, provided valuable input and help in carrying out the data analysis.

Ben Jones, CRN NT Communications and Engagement Manager, was instrumental in helping set up the surveys on Google Forms and ensuring the surveys looked clear and professional.

I would also like to thank all those from the CRN North Thames core team, especially members of Research Delivery Manager Aryana Chopra's teams in Division 1 and 2, who helped upload the paper surveys.

Introduction

In 2019, the Clinical Research Network Coordinating Centre (CRNCC), in conversation with stakeholders across the Network and research landscape, made the decision to nationally standardise the Patient Research Experience Survey (PRES) survey questions and methodology.

The aims of this change were to:

  • Support the long-term ambition of every participant in an NIHR supported study has the opportunity to feedback about their experience
  • Increase the usefulness of the data collected by the Participant in Research experience Survey (PRES)
  • Increase capacity for local CRNs and partner organisations to disseminate and act on the results of PRES by reducing local capacity needed to deliver the survey

The CRNCC worked with the Local Clinical Research Networks to analyse previous surveys and then commissioned the Picker Institute, a charity with globally recognised expertise in patient experience measurement, to further analyse the surveys and methodologies. This led to developing a new national set of questions for adults and children, as well as new delivery guidance.

  • The new national approach for PRES came into effect from April 2020, which came one month following the announcement of a global pandemic and a significant increase in the number of urgent public health studies
    Copies of the new nationally-agreed surveys are listed in the Appendix; there is one adult and three children’s surveys.
    Recruitment sites were given the choice of paper survey or to complete the survey online. To help with the delivery of the online survey, sites could also use URL slips which included a QR code, the link for completing the survey and space for the research staff to add the short study title and study number. Examples of the URL slips are listed in the Appendix.
    Completed paper surveys were then either posted to the CRN North Thames (NT) office, or scanned to Patient and Public Involvement and Engagement Manager Christine Menzies, who arranged for them to be uploaded with the help of the NT core team.

PRES 2020/21 was launched in CRN NT at the end of August 2020 and went live the following week on 1st September 2020. With the huge pressures on partner organisations dealing with the pandemic, the decision was taken to not set targets, but simply asked to deliver PRES as best they could in the circumstances. Each site has a PRES lead responsible for the delivery of the survey within their site. For a list of all PRES Leads, see the Appendix A.

PRES remained open to the end of March 2021 and was then rolled over to PRES 2021/22.

PRES leads were sent monthly updates between September 2020 to March 2021 with a list of tips and an updated league table listing the site and the current total number of participants.

Results

The results of the quantitative questions (bar the demographic data) for the adult and children’s surveys are listed in the tables below.
The percentages in the tables show the percentage of adults (table 1) or children (table 2) that responded with 'Agreed' or ‘Strongly agreed' or 'Yes' or 'Yes, to some extent' to the questions asked.

Table 1 - Adult responses 

Trust/Site 

 

Number of SurveysWas it easy or hard to understand the information you got at the start of the research?I knew what was happening during the researchI know how I will get the results of the researchI know who to talk to if I have any questions about the researchThe researchers valued my taking partThe research team always treated me with courtesy and respectI would take part in research againHow long have you been taking part in this research study?
At least one year but less than three yearsAt least three months but less than one yearLess than three monthsThree years or longer
Barking, Havering and Redbridge NHS Trust  22 82%  59%  55% 91%   86%  100% 91%  23%  23%  27%  23% 
Barts Health NHS Trust  284 94% 67%  89% 94%  95%  98% 96%  5%  6%  85% 2% 
Basildon Hospital  104  
91%
74% 80% 82% 95%  97% 94% 15%  42%   37% 4% 
Broomfield Hospital  193 95% 70% 90% 95% 91%  96% 96% 1% 48%   50%   0%  
Homerton University Hospital NHS Foundation Trust  46  93%  43% 72% 59% 91%   98% 93%   0%  4%  80% 2% 
LEH  14  100%  64% 86%  79%  100%  100% 93%   0%  14%  79%  0%
Moorfields  157  94%  63% 76% 90% 85%  95% 92%  15%  36%  41%  7
NoCLoR  208  95%  71% 87% 74%  89%  97% 95%  5%  29%  58%  0
North Middlesex Hospital  209  96%  71% 76% 86%  83%   97% 92%   3%  75%  16%  4
 PAH  272  95%  83% 93%  96%  97% 100%  96%  0%  13%  86%  0
 RNOH  16  88%  69% 88%  100% 100% 100%  88%  6%  81%  13%  0
Royal Free  252  95%  67% 71% 94% 94%  98%  96%  0%  15%  84%  0
Royal National ENT and Eastman Dental Hospital  13  69% 46% 54% 54%   92% 92%  85%  23%  23%  31%  0
Southend Hospital  94  93% 80% 90%  85%  94%  97%  97% 2%   79%  15%  1
 UCLH - Cancer   114 93% 66% 68% 95%  88% 97%  95%  46%  18%  9% 24
UCLH - CRF 205 95% 80% 81% 95%  93% 98%  95%  11%  47%  36%  3
UCLH - Stroke  30 90% 77% 87% 67%  87% 100%  97%  0%  0%  97%  0
UCLH - Women's Health Research  32   94%  44% 44% 81%  94%  97%  94%  0%  34%  56%  0
West Herts NHS Trust 16  100%  94% 94%  100%   100%  100%  100%  86%  6%  0%  0
Whittington Health NHS Trust  50  96%  70%  88% 98%   92%  100% 98%   0%  20%  78%  0
Total  2331  94%  71% 82% 89%  92%  98%  95%  7%  32%  55%  3

Table 2 - Responses from the three children's surveys

0-6 years old: 

 

Trust/Site 

 

Number of SurveysWas it easy or hard to understand the information you got at the start of the research?I knew what was happening during the researchI know how I will get the results of the researchI know who to talk to if I have any questions about the researchThe researchers valued my taking partThe research team always treated me with courtesy and respectI would take part in research againHow long have you been taking part in this research study?
At least one year but less than three yearsAt least three months but less than one yearLess than three monthsThree years or longerBlank
Barts  2 50%  0%  0%  0%  0%  100%  50%  0%  100%  0%  0%   0% 
GOSH  14 100% 100%  93%  100%  100%  100%  93%  0%  64%  14% 14%  7%
LEH  1  
100%
100% 100% 100% 100% 100% 100% 0%  0%   100% 0%  0% 
Moorfields   1 100% 100% 100% 100% 100% 100% 100% 100% 0%   0%   0%   0%  
NoCLoR   1 100% 100% 100% 100% 100% 100% 100% 0%   0%   100% 0%   0%  
Total   19 95%  89%  84%  89%  89%  100%  89%  5%  58%  21%   11%  5%

 

7-11 years old: 

 

Trust/Site 

 

Number of SurveysWas it easy or hard to understand the information you got at the start of the research?I knew what was happening during the researchI know how I will get the results of the researchI know who to talk to if I have any questions about the researchThe researchers valued my taking partThe research team always treated me with courtesy and respectI would take part in research againHow long have you been taking part in this research study?
At least one year but less than three yearsAt least three months but less than one yearLess than three monthsThree years or longerBlank
Barts  9   78%   67%  11%  44%  89%  89%  89%  0%  100%  0%  0%  0%
GOSH  11   82%      91%  55%  100%  100%  100%  100%  27%  9%  9%  9%  45%
Moorfields   10   90%            100%  60%  100%  100%  100%  100%  30%  30%  30%  10%  0%
NoCLoR   1   100%    100%  100%  100%  100%  100%  100%  0%  0%  100%  0%  0%
Total   31   84%  87%  45%  84%  97%  97%  97%  19%  42%   16%  6%  16%

 

12-15 years old:

 

Trust/Site 

 

Number of SurveysWas it easy or hard to understand the information you got at the start of the research?I knew what was happening during the researchI know how I will get the results of the researchI know who to talk to if I have any questions about the researchThe researchers valued my taking partThe research team always treated me with courtesy and respectI would take part in research againHow long have you been taking part in this research study?
At least one year but less than three yearsAt least three months but less than one yearLess than three monthsThree years or longerBlank
Barts   11 73%   91%   36%   73%   91%   100%   91%   27%   55%   9%   9%   0%
GOSH  22  100%   95%   95%   100%   100%   100%   100%   14%   45%   5%   14%   23%
LEH  3   100%   100%  100%   50%  100%  100%  100%  0%  100%  0%  0%  0%
Total   35 91%   94%   77%   89%   97%   100%   97%   17%   51%   6%   11%   14%

To view the raw data, including the qualitative data and demographic data, sites can log onto the PRES dashboard on the ODP App which can be accessed via the link below.

Please note, you need an ODP account to access the app. if you do not have one, go to https://portal.nihr.ac.uk/register?app=ODP. You can use your NHS trust or academic email to register.

Discussion

Adult Survey

Broomfield Hospital (Mid and South Essex Trust) and The Royal Free Hospital submitted all their surveys online. At Broomfield, each participant was given a slip of paper with the link to complete at home or on their phone in clinic. The slip of paper had a QR code, which really made it easy to complete. At the Royal Free Hospital, the vaccine team made up laminated cards, containing the QR code and answers to the first three questions the participants had to complete – site, study name and IRAS number. Participants were asked to complete the survey after being given the card between receiving their vaccine dose and waiting for their 30-minute post-dose vital signs check. In light of the pandemic and infection control, when they finished with the card, it was cleaned using disinfectant wipes and ready for the next participant.

At Barts Health, the research team supporting the Vaccines Trials Centre, added the study details to the PRES posters and had these up in the observation areas. They also made paper copies available, giving participants a choice whether to complete the survey online or on paper. Participants chose overwhelmingly to complete the paper surveys.

The majority of the adult surveys were linked to infection disease trials, namely the Urgent Public Health badged Covid vaccine trials such as the SIREN study.. Further details of the breakdown by specialty can be found on the PRES dashboard.

Barts Health NHS Trust collected 284 responses in total, the highest number for all participating sites. Princess Alexandra Hospital collected 272; The Royal Free 252, the primary care from Noclor 209; the Clinical Research Facility at UCH 205 and Broomfield Hospital (Mid and South Essex NHS Trust) collected just under 200 with 198.

Overall, the responses to specific questions were scored highly, e.g. 98% of adult responders agreed or strongly agreed the research team treated them with courtesy and respect and 95% agreed or strongly agreed they would participate in research again in the future.

Conversely, only 71% of participants agreed or strongly agreed they knew what was happening during the research, and only 89% agreed or strongly agreed they knew who to talk to if they had an issue or concern during the research.

Children’s Surveys

The numbers were quite small overall across each of the three children’s surveys (0-6 years 19, 7-11 years 31 and 12-15 years 35), so it’s difficult to draw too many conclusions. It was very encouraging, however, to see a number of respondents saying they ‘Agee’ or ‘Strongly agree’ for all of the quantitative questions.

The impact of the results

Some examples of how participating sites have used their local data to improve participants' experience are listed below:

The Royal Free Hospital

Based on participant feedback, the following activities have been planned to improve patient experience:

  • Local comprehensive training on trial activities to ensure team is confident in communicating trial related information to participants
  • A site map with directions to where the clinics will take place emailed to participants prior to their visit
  • Frequent emails and breakdown of key changes in the Patient Information Sheet to be sent to participants prior to their visit
  • Extra staff will be based in the clinic to give tea/coffee/snacks to participants
  • Summary sheet to be given to participants as an additional instruction tool for app usage on trial
  • Signage will be created to improve clarity on venue space within the trust.

Clinical Research Facility at UCLH

Have produced an information sheet to give all future vaccine participants; the content was based on comments from participants.

Barts Health NHS Trust

Based on earlier PRES results and stakeholder consultations, including feedback from their COVID research lay advisory group, the team implemented the following measures which helped contribute to the high PRES scores for participants in the ENSEMBLE-2 vaccine study:

  • To provide good higher quality refreshments as an extra gesture of thanks, which most likely contributed to the overall feeling of being valued.
  • Produced a directions/useful info sheet (including the site wifi code, info about local eateries etc) which was sent to all vaccine trial participants in advance of their first visit.
  • Produced an A5 thank you postcard, with PRES details and links to ‘further info’ on the back.
  • Showed short films to participants on their first visit so they knew what to expect during the trial.
  • Engaged the help of their Patient Research Champions at the vaccine trials centre with PRES and serving teas/coffees.
  • Comments from participants regarding the study specific app have been passed on to the study sponsor.

Next steps to be completed by the end of September 2021

  • PRES leads to review their raw site data and look for areas where improvements can be made.
  • PRES leads to work with colleagues to use the data to help promote the great work done by the research teams. This should include some of the statistics as well as a number of the positive anonymous quotes in articles and posters on your trust's websites, in GP surgeries and around hospital waiting areas etc.
  • PRES Leads to discuss with their clinical and R&D colleagues how PRES can be incorporated into routine practice when participants come to the end of their research study.
  • PRES Leads to work with colleagues as above to look for ways to encourage participants to complete the surveys ideally online, at the end of their research study.
  • PPIE Lead to work with sites to encourage them to review their local data on a regular basis using the PRES dashboard on the ODP App. You need an ODP account to access the app. If you do not have one, go to https://portal.nihr.ac.uk/register?app=ODP. You can use your NHS trust or academic email to register.
  • PPIE Lead to arrange a number of drop-in sessions during 2021/22 with PRES Leads during the year with to encourage leads to share examples of good practise in relation to the above points, starting with 7th July 2021 at 4pm. Contact Christine.menzies@nihr.ac.uk for further details and to receive the Microsoft teams invite.

Appendix A - PRES Leads at each participating site 

Barking, Havering and Redbridge University Hospitals NHS Trust - Laura Parker and Ben Sartoris
Barts Health NHS Trust - Neeta Patel and Olivia Coleman
Basildon and Thurrock University Hospitals NHS Foundation Trust - Kerry Goodsell
Great Ormond Street Hospital for Children NHS Foundation Trust - Allyson Gray
Homerton University Hospital NHS Foundation Trust - Christine Mitchell-Inwang
Luton, Essex & Hertfordshire Primary Care Team - Carole Bartlett
Mid Essex Hospital Services NHS Trust - Tracey Camburn
Moorfields Eye Hospital NHS Foundation Trust - Edward White and Amanda Davis
Noclor North East London Primary Care Team - Letitia Coco-Bassey
North Middlesex University Hospital NHS Trust Chloe van Someren
Royal Free London NHS Foundation Trust - Helen Jones
Royal National Orthopaedic Hospital NHS Trust - Fiona Fitzgerald
Southend University Hospital NHS Foundation Trust - Prisca Gondo
The Princess Alexandra Hospital NHS Trust - Nicola White
The Whittington Hospital NHS Trust - Kathryn Simpson
UCLH - Cancer Research Team - Lydia Ward
UCLH – CRF - Raj Khengar
UCLH - Women's Health Research - Olivia Newth and Jihana Ali
UCLH - The Eastman Dental Hospital - Victoria Hoskins and Rachel Knight
UCLH - Stroke Research Centre - Azra Banaras
West Hertfordshire Hospitals NHS Trust - Fiona Smith

Appendix B  - Adult Survey

Online survey for ADULTS and over 16s

Appendix C - Children’s 0-6 years survey

Online survey for children 0-6 years old

Appendix D - Children’s 7-12 years survey

Online survey for children 7-11 years old

Appendix E  - Children’s 12-15 years survey

Online survey for children 12-15 years old