Wessex participants report “feeling a part of something worldwide” by taking part in research during the pandemic
A survey conducted by the National Institute for Health Research (NIHR) Clinical Research Network (CRN) Wessex has seen local participants report having a positive experience of being involved in a research study for the fourth year running.
The 2020/21 CRN Wessex Participant in Research Experience Survey (PRES), which received 486 responses from research participants attending appointments in the Wessex region, showed that:
- 96.5% of participants surveyed agreed that they would participate in another research study
- 81.1% of participants surveyed felt that they had been kept updated about the research
- 96.4 % of participants surveyed said that they felt they had been treated well in the study
This year’s survey was mainly shared with participants taking part in urgent public health (UPH) studies, particularly COVID-19 vaccine trials, as the delivery of other research studies were greatly impacted by the pandemic.
The survey, which was shared solely online, provided an opportunity for research participants to anonymously share their experiences of being involved in a study.
A large majority of those surveyed reported that research staff treated them with courtesy and respect, and that they felt valued for taking part in research.
The survey also highlighted that one of the key motivators for taking part in clinical research during the pandemic was the benefit of being regularly tested for COVID-19, with one participant explaining:
“Weekly swab tests and 2 weekly blood tests have made me feel more confident that I had not contracted a covid infection.”
Another key benefit reported by those surveyed was making a difference to the pandemic situation, with one participant mentioning: ‘“Feeling part of something worldwide” and another saying:
“It’s good to be involved in something that helps in any way to find out more about the current pandemic.”
This report highlights the positive experience that most participants received from taking part in urgent public health studies in 2020/21 and commends the staff involved. It does, however, highlight the lack of diversity in those taking up opportunities in research, which is a gap we are dedicated to addressing.
There were a number of recommended areas for improvement, including participants not having to fill out paperwork, a wider choice of hospitals or locations to attend appointments and more regular updates on the progress of the study, including any results.
Understanding the participant experience of research is key for CRN Wessex and its NHS partner organisations, who will use the feedback to shape how future research is delivered. A full report detailing the findings is available to view.
CRN Wessex plans to keep its 2021/22 survey open throughout the financial year, thanks to the help of its partners.