A patient’s perspective on using samples and data for research

An interview with Richard Stephens, Chair of the NCRI Consumer Forum

Medicines Discovery Catapult

Photo of Richard Stephens

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

Richard was the patient representative on the Independent Cancer Taskforce that produced the English National Cancer Strategy. He Chairs the NCRI’s Consumer Forum and has roles with NIHR, NHS England, PHE-NCRAS, CQC, MRC CTU, Genomics England, Cancer Research UK, ABPI, BBMRI-ERIC and more.

Richard is a founder member of the AllTrials and useMYdata movements, and the founding Co-Editor-in-Chief of Research Involvement and Engagement, the world’s first (and only) academic journal to cover involving or engaging patients, caregivers and the public as partners in health and social care research.

All the above roles are voluntary, with some remunerated via honoraria. Richard has also worked with life science companies as an NCRI Consumer, and with Pfizer and AstraZeneca as a contracted advisor.