High numbers of research participants believe their contribution is valued by researchers
Results from the 2020/21 National Institute for Health Research (NIHR) Clinical Research Network (CRN) Participant in Research Experience Survey (PRES) show that 93% of participants felt the contribution they made to research through taking part was valued by the researchers and study teams.
With the support of all 15 local CRNs and their partner organisations across England 20,749 adult research participants who had taken part in NIHR supported research, completed the first nationally standardised survey between 1 April 2020 to 31 March 2021.
The PRES survey is conducted annually by the NIHR CRN and provides an opportunity for research participants to share their experience of taking part in research. It considers all aspects of the participant’s research journey; from information participants receive before taking part in the study; to the way in which they are treated and communicated with during the study period; to the dissemination of results.
Survey respondents highlighted the professionalism, knowledge and friendliness of the research teams as contributing to their positive experiences of taking part in research with 98% of respondents saying they felt they were treated with courtesy and respect; and 94% of respondents said they would consider taking part in research again.
96% of respondents felt they received adequate information about the trial or study before they took part, which is a crucial role of the research team as part of the informed consent process. Additionally, 96% of respondents said they had been kept updated throughout the study period pointing to good levels of communication between the research teams and participants.
Laurie Oliva, Head of Public Engagement at NIHR Clinical Research Network said:
“We are delighted to see the hugely positive results generated from PRES this year. 2020/21 was an extraordinary year for the NHS and the integrated research system with unprecedented pressures being felt across the whole of the system. NHS research teams were delivering priority research studies in response to the COVID-19 pandemic, alongside essential, critical care for patients and they continued to do so with professionalism, diligence and care.
“This is the first time we’ve had a standardised set of PRES results and that brings us greater insight about people’s experience of taking part in research and greater opportunity to improve the delivery of research studies and trials locally and nationally.”
Reflecting the societal change of using online tools for many aspects of people’s lives during 2020/21, more than two thirds of respondents opted to complete the survey using an online system; and for more than 80% of respondents, this was their first research study or trial.
Real-time improvements to research delivery
PRES helps those involved in the design and delivery of research to understand the factors that impact the participant’s experience of research, and this year there has been some real-time improvements made to the way in which some research has been delivered whilst the studies are taking place.
Staff from The Newcastle upon Tyne Hospitals NHS Foundation Trust used the feedback received from the PRES survey to reduce participant’s waiting time and to improve the check-in process for participants to a COVID-19 vaccine trial.
Fiona Yelnoorkar, Matron at the Clinical Research Directorate at The Newcastle upon Tyne Hospitals NHS Foundation Trust:
“As we received feedback in real-time, we were able to act upon it immediately. We identified that the process of checking-in participants for their appointment could be improved by having one designated team member placed at reception to facilitate the participant’s journey through the unit.
“The change was a success, the checking-in process was much smoother, wait times were reduced and appointments were carried out more efficiently. It’s important to us that the participant experience is as positive as possible, and we welcome any opportunity to make the process of taking part in research easier.”
Good baseline to progress improvements
The results from this year’s PRES provide a consistent set of results across England, enabling the NIHR to look at where and how it can develop equity of access to the survey as the number of survey respondents represent only 2% of the number of participants who took part in research in 2020/21.
Equally this year’s baseline data highlighted areas of development in terms of improving how participants receive information about the study or trial they are participating in and how they are communicated with throughout the course of the trial period including the dissemination of results.
For a PDF copy of the full Participant in Research Experience Survey 2020/21 annual report please email the national CRN PPIE team.