Richard Stephens has survived two cancers and a heart emergency, and now has continued co-morbidities and late effects. He has participated in four interventional studies and a dozen others and has donated data, tissue and samples for research.
Richard currently chairs BBMRI-ERIC’s Stakeholder Forum and NCRI CTRad’s Consumer Panel. He led the NCRI Consumer Forum 2012-2019, was the patient co-author of the Cancer Strategy for England, and sits on strategic groups for NIHR, NHS England, PHE, Genomics England, and Macmillan Cancer Care, as well as being Cancer Research UK’s longest-serving patient representative. He is a Board member of the Leeds CDT in AI, and of Glasgow CTU.
Richard helped found the AllTrials campaign and the useMYdata movement, and is the founding co-Editor-in-Chief of Research Involvement and Engagement, the world’s first specialist journal for lay involvement in health and social care research. He works with industry and with patient groups in Europe, Canada and the USA.
Richard is in his third decade as a Patient Advocate, now his full-time activity. He serves on trial management or steering groups for studies in cancer and mental health, including epidemiological and data-driven studies. He has also had successful professional careers in teaching, journalism and social housing, introducing tenant involvement in estate management and transparent methods of housing allocations. He was Chair of Governors at three schools in his home town of Stevenage, winning awards for improving outcomes for under-achieving groups.
