Patient Perspective

Richard Stephens has survived (so far) two cancers, a heart emergency, and continued co-morbidities and late effects. He has participated in four interventional studies and over a dozen others and has donated tissues and samples for research. Richard is in his third decade as a Patient Advocate, which is now his full-time activity. He currently chairs BBMRI-ERIC’s Stakeholder Forum (Europe’s biobanking infrastructure) and NCRI CTRad's Consumer Panel (radiotherapy research). He led the NCRI Consumer Forum 2012-2019 and sit on strategic and/or research groups for NIHR, NHS England, PHE, Genomics England, National Data Collaborative, Macmillan and Cancer Research UK, and works with industry and with patient groups in Europe, Canada and the USA. Richard was the patient co-author of the 2015 Cancer Strategy for England, and in 2020 was an advisor to the UK government on several Covid issues. He was the patient lead for the NCRI-JLA Living With And Beyond Cancer research priority-setting project, with a particular interest in late effects, in view of his own heart problems. Richard helped found the AllTrials campaign and the useMYdata movement, and he is the founding co-Editor-in-Chief of the Journal of Research Involvement and Engagement. He has spoken at meetings of the UK and European Parliaments on the need for international standardisation and co-operation in health research and delivery of care.