Speakers

Roger Wilson CBE

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. 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 is not claim a statistician or a methodologist, just an enquiring mind. With PROs, he has been working with the Institute of Cancer Research, 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 some sarcoma clinical trials.

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.

Presentation: Patient Advocacy - A Step Beyond PPI?

Patient advocacy is a catch-all term summarised in the ugly initialisation PPI. This talk is about personal experience starting in 1999 with a diagnosis of rare cancer and ongoing today, in remission but with a range of involvement in research, service development, patient support and regulatory matters both nationally and internationally.

During his talk Roger will touch upon the familiar and the unfamiliar ranging from the use of PROs in dose finding Phase I clinical trials, to involving research organisations in patient involvement, safeguarding as a key topic in involvement and asking how do you use Real World Data in a rare cancer RCT?

Prof Nick Hulbert-Williams

Nick Hulbert-Williams completed an undergraduate degree in Psychology with Clinical and Health Psychology at the University of Wales, Bangor, and was awarded his PhD from Cardiff University School of Medicine in 2009. He is a British Psychological Society Chartered Coaching Psychologist, and currently holds the posts of Professor and Head of the Department of Psychology at Edge Hill University, and Adjunct Professor at Flinders University in Australia.

Nick’s research focusses on how we can apply and use psychological theories to better understand the challenges of cancer treatment and survivorship, and to develop effective interventions to support patients, their families, and their healthcare professionals. He has received over £5.8m in research funding to support this work, has published over 80 journal articles and 10 book chapters, and has recently received recognition through awards from North West Cancer Research and Marie Curie. In addition to his role Chairing BPOS, Nick is a member of the IPOS Research Committee and is Research Lead for the BPS Division of Coaching Psychology.

Presentation title: Psychology in psychosocial oncology: Time for a rethink?

Psychological science is a cornerstone discipline within psychosocial oncology. Cancer diagnosis, treatment, and survivorship are profoundly impactful life events that are often understandably distressing. In some cases, distress reaches established thresholds for diagnosable psychopathology, though prevalence is relatively low in many patient subgroups. Psychology offers a range of interventions to help patients and their families cope with the psychological impact of cancer, yet substantial gaps remain in the evidence base. In this talk, I will review what current evidence tells us and raise some provocative questions about the future role of psychology in cancer care. I will argue that a shift in emphasis, grounded in contemporary psychological science, could enable psychology to have greater impact and to build a stronger evidence base for its contribution to multidisciplinary cancer care.