Hon President Sarcoma Patient Advocacy Global Network
Founder - Sarcoma UK, United Kingdom
Roger Wilson was diagnosed with a sarcoma in 1999 and has had six recurrences since. Treatment has involved surgery , including an amputation, chemotherapy (on an EORTC study) and radiotherapy. His latest surgery in 2013 was bilateral thoracic metastectomy.
He has been an active patient advocate since 2002 working within the UK’s cancer research community, with a focus on sarcoma. In 2003 he founded and ran Sarcoma UK until it moved to London in 2011 and he was one of the co-founders of Sarcoma Patients Euronet in 2009. He has co-authored many papers on sarcoma, quality-of-life issues and patient involvement. He has been active in the UK and Europe working on professional educational programmes and developing patient involvement in research. Until recently he chaired the EORTC’s Patient Panel. He is an Hon President of Sarcoma Patients Advocacy Global Network (SPAGN).
He has a particular interest in methodology issues including statistics, study design, PROs, quality of life appraisal, data matters and regulatory affairs. He does not claim to be a statistician or a methodologist, just an enquiring mind. With PROs (patient reported outcomes), he has been working with the UK’s NCRI, NKI in the Netherlands, the University of Birmingham Centre for PRO Research (CPROR) and with EORTC’s Quality of Life Group. He is also the lead patient on the team who have developed the SarcoSight surgical clinical trial.
He was appointed CBE in the 2011 New Year Honours and holds honorary degrees from the Universities of Sheffield and Lancaster. He has three daughters and five grandsons. By background he was a journalist and TV producer.
