Richard Stephens is a survivor of two cancers, a heart emergency, and continued co-morbidities and late effects. He has participated in four interventional studies and nine others.

Richard formerly Chaired the NCRI’s Consumer Forum and now Chairs BBMRI-ERIC’s Stakeholder Forum. He sits on strategic groups for NIHR, NHS England, PHE-NCRAS, CQC, MRC CTU, Genomics England, Cancer Research UK and ABPI, and works with industry and with patient groups in Canada and Europe.

Richard was the patient representative who co-authored the (English) Cancer Strategy 2015-2020, was a founder member of the AllTrials campaign and useMYdata movement, and is co-Editor-in-Chief of the Journal of Research Involvement and Engagement. He is the lead advocate for the NCRI’s Living With And Beyond Cancer research priorities.

ABSTRACT

Title: Living With and Beyond Cancer – UK Patients’ Top Ten Research Priorities (And 16 More Too)

Summary: In the UK cancer diagnoses are increasing, as are survival rates, and the experience of cancer patients is now a health service priority alongside clinical outcomes. There is some research into the problems cancer patients and survivors face, but very little of it has been driven by the patients’ own priorities.

To determine priorities for research that will help people live better with and beyond cancer, the UK National Cancer Research Institute partnered with the James Lind Alliance on a Priority Setting Partnership. The two-year project involved two UK-wide surveys which attracted more than 3500 responses from patients, carers, and health and social care professionals.

The project identified 26 key questions, which were prioritised by patients and carers to produce the Top Ten Research Priorities for Living With and Beyond Cancer. Or to put it more simply, these are the things patients want to know to cope with cancer and its treatments and effects; these are the questions they want us to answer for them.