Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department plans to take to involve young cancer patients in discussions about clinical trial designs.

Patient and public involvement and engagement in research is an essential part of delivering world-class clinical trials, improving the accessibility of health and care studies, and increasing recruitment rates and retention of participants.

The Department-funded National Institute for Health and Care Research (NIHR) expects patient and public involvement in the research it supports. Applicants for NIHR funding are required to set out plans for involving patients and the public in funding applications, which are assessed by funding committees. Patients and the public work with researchers to help shape aspects of the work, including what research is done, the research design, and how the results are shared.

The 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. The PRES currently operates nationally across the NIHR Research Delivery Network portfolio, and is offered to all participants in eligible cancer studies, including young people.

On 4 February 2025, the Department relaunched the Children and Young People Cancer Taskforce to identify ways to improve outcomes and experiences for children and young people with cancer. The taskforce will be engaging with experts from across the sector, including clinicians, researchers, advocates, and young cancer patients with lived experience as part of its work.