How volunteer input has shaped research

The impact that volunteers have on research doesn’t end at their participation in studies.

Over the past couple of years, the importance of health research has been front and centre in the developments of treatments and vaccines for COVID-19. And while participants in research studies played a vital role in these developments, that’s not the end of their contribution.

From the ways we hear about studies in our area, to the techniques used by research teams to gather and understand data, much of our volunteering experience will have been shaped by feedback from past participants. 

Hand holding a pen ticking a box

In the National Institute of Health Research (NIHR) Clinical Research Network (CRN), understanding the experiences of those who have volunteered before is vital for improving the way we carry out research so that our volunteers have the best experience possible.

We find out about these experiences through our Participant in Research Experience Survey (PRES), which is offered to volunteers in NIHR supported studies by the research team when they complete their part in the study. 

Key findings 2020/2021

The 2020/2021 PRES surveyed 20,749 participants and 15 local Clinical Research Networks and their partner organisations supported its delivery. 

Some of the key findings were: 

  • 94% of participants said they would consider taking part in research again.
  • 93% of participants felt valued by researchers for taking part in research.
  • 98% said research staff have always treated them with courtesy and respect.
  • 89% said they had been kept updated during the study.
  • 96% felt they received adequate information before they took part in the study.

Improvement was suggested in three areas that were flagged in the survey to ensure participants had an even better experience: 

  • The practicalities of participation - Participants mentioned parking, local facilities and appointment times 
  • Feedback - Participants mentioned wanting more regular updates and consistency of communication 
  • Information and communication - Participants mentioned having an open line of communication with staff would be beneficial

It’s this kind of feedback that research teams act upon in order to help make the volunteer experience the best it can be.

Here are some of the ways participant PRES and participant responses have been utilised by research teams to help shape future studies. 

Reducing participant waiting times following real time feedback

The Newcastle upon Tyne Hospitals NHS Foundation Trust used the feedback from the survey to identify an issue with waiting times for participants taking part in the Oxford AstraZeneca COVID-19 vaccine trials. 

  • The original check-in process involved two staff members – one to check participants in and one to call them in for the appointment. But one PRES participant had noted a delay in being seen due to a miscommunication between the two. 

  • The staff were able to act on this almost immediately, and changed the check-in process so that participants would have one member of staff to facilitate the participant through from check in to the appointment. 

  • The change successfully helped make the check-in processes smoother and more efficient and wait times were reduced, making the whole experience easier for participants. 

Recognising the efforts of volunteers

One of the aims of NIHR CRN North West Coast network’s Research Delivery Strategy was to make research an integral part of healthcare.

An essential part of this would be receiving feedback from research volunteers to see what they felt worked well about their experience and where improvements could be made.

PRES feedback is key for getting these kinds of insights, and so the team looked at ways they could help encourage more volunteers to get involved in PRES. 

  • The team wanted to recognise the efforts of the volunteers and show them how much their contributions had been appreciated. Different ways of distributing the PRES survey while showing the volunteers just how much they were valued were discussed.

  • PRES “Thank You” cards were created by the in-house team, with three different designs featuring key regional research sites. The PRES QR code and website link were included with the cards, so that volunteer could easily access the survey.

  • The gesture was greatly appreciated by the volunteers, and after the initial first set of cards were sent out, more were printed and distributed. 

  • Following the “Thank You” card distribution, the team noticed a significant increase in the number of PRES participants compared to the previous year. Responses increased from 870 to 1296. The Thank You cards are now part of NIHR CRN: North West Coast’s Patient Engagement Strategy. 

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