Question to the Department of Health and Social Care:

To ask His Majesty's Government what progress the Department for Health and Social Care has made in (1) collecting data on the experience of young people with cancer regarding clinical trials, and (2) increasing transparency in accessing available data on young people’s experiences with cancer clinical trials.

The research participant experience is an essential part of delivering a world-class research system with participant feedback providing research delivery teams, study sponsors and the Department with actionable data to improve accessibility of health and care studies, and increase recruitment rates and retention of participants.

The Department-funded National Institute for Health and Care Research (NIHR) has operated the Participant in Research Experience Survey (PRES) since 2015/16, which aims to offer as many research participants as possible the chance to contribute their experiences of taking part in research. PRES currently operates nationally across the NIHR Research Delivery Network portfolio and is offered to all participants in eligible cancer studies including young people.

To improve data collection on research experience, NIHR is currently exploring a national roll-out of a digital PRES which will increase ease and access for participants to provide feedback on their experience. This system will also be scalable beyond the NIHR Research Delivery Network Portfolio.

To increase transparency in accessing available data on participants’ experiences of research, the PRES dashboard can be accessed by users from across the research system with the following email address domains: nhs.uk, nhs.net, nhs.scot, dh.gsi.gov.uk, ac.uk, hscni.net, nrs.org.uk, mhra.gov.uk, gov.uk, ncri.org.uk.