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PRES - West Midlands (PC Bulletin)

Contents

By Claire Talbot CRN Primary Care Research Nurse

The Participant in Research Experience Survey (PRES) was developed by the National Institute of Health Research (NIHR) and has been conducted annually in the Clinical Research Network West Midlands (CRN WM) since its pilot in 2015-2016. 

The survey comprises of a national set of standardised questions for adults, young people and children. It offers research participants the opportunity to share their experiences of taking part in NIHR supported research and demonstrates that their contribution is valued.

The information participants provide via PRES is invaluable and should never be underestimated. It can help identify areas for improvement, celebrate positive experiences of participating in research, increase awareness of the factors affecting participant recruitment and retention, and so help improve the way research studies are designed and delivered. 

It is important for people to have the best experience possible when taking part in research so that they can complete their research journey, go on to take part in further studies, and also promote research participation to their families and friends - PRES can help achieve this. 

In Primary Care, PRES is promoted in a variety of ways and research staff can broach the subject at any point during a participant’s research journey. The survey can be offered in a digital format, whereby participants can gain access to the Google survey form via a QR code or URL using a smartphone or computer, or as a paper survey which can be posted to the central processing centre once completed. 

Posters and flyers promoting PRES have also been used in GP waiting rooms, and provide an opportunity for participants to come forward independently. Here is an example.

1,523 PRES responses were received in 2021-22 from across the West Midlands, the highest number ever recorded. Primary Care delivery staff were encouraged to look at these responses via the CRN WM PRES Dashboard, which provides information about PRES response rates specific to studies and sites in real time, and feedback was also provided. 

Once the PRES responses were collated, reports were produced both locally and nationally and shared across the Network. Overall, the comments were positive and highlighted that those who took part in research had a good experience. In Primary Care, whilst there were some comments regarding site specific issues such as car parking, the majority of responses were very encouraging and participants provided comments such as: 

‘The staff who called were lovely and made me feel like I was a valued person whose help was needed’ 

‘Clear information and polite and friendly researchers. An opportunity to hopefully help’

‘Courteous and knowledgeable presentation of the objectives and requirements made it easy to agree to take part’

‘Knowing it may be of help now and in future’

Whilst it is very important to acknowledge and celebrate these positive experiences, PRES also identifies areas for improvement. The findings from 2021-2022, highlighted two areas, both of which were concerned with the provision of information for research participants.  These were:

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

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

In addition, the findings also supported the need for the work the CRN WM is already undertaking to make research more diverse and inclusive across the West Midlands.

In summary, PRES enables those working in research the opportunity to provide participants with the best research experience possible. However, it is important to acknowledge that without the support of the research delivery team in promoting PRES and the research participants themselves in volunteering their time and help this would not be possible. 

For more information please email mary-anne.darby@nihr.ac.uk

Useful links:

PRES Dashboard: https://datastudio.google.com/s/jNnLu1nfy0Y

Adult Questionnaire: https://forms.gle/dKE29jX4dEJDy9mL7