More than nine in ten patients taking part in research at UCLH would consider doing so again and felt valued for their participation, according to a national survey.
Results of the Patient Research Experience Survey (PRES) from the National Institute for Health Research (NIHR) for 2020/21 – an annual survey of people who have taken part in clinical studies – found:
- 94% of research participants at UCLH said they would consider taking part in research again
- 98% said they were treated with courtesy and respect by research staff
- 92% said they felt that researchers valued their participation in research
- 93% said the information they received before taking part in research prepared them for their experience while on a study
373 patients at UCLH took part in the survey between September 2020 and March 2021. Most had taken part in studies relating to infection – reflecting the current focus at UCLH on Covid-19 research – and cancer.
Patients responding to the survey had also taken part in trials relating to dementia and neurological diseases, haematology, oral health, women’s health, and stroke.
Around half of respondents took part in studies run at the NIHR UCLH Clinical Research Facility (CRF) with many participating in Covid-19 vaccine trials, run at the UCLH Vaccine Research Centre, part of the CRF.
For 72% of the people surveyed at UCLH, it was the first time they had taken part in a research study.
UCLH and the NIHR use results from the annual survey to ensure patients have the best possible experience while taking part in research. Since the 2020/21 survey, staff at the CRF have developed an information sheet for vaccine trial participants based on comments received from respondents.
UCLH research teams are now taking part in PRES for 2021/2022, which began in April 2021. 121 responses have already been received, with the survey now run all year round.
The UCLH Research Directorate encourages all research teams to routinely offer participants the chance to take part in the survey.