This view is echoed by Professor Alan Ashworth, former Chief Executive of the Institute of Cancer Research, London, who was appointed to the prestigious post of Director of the UCSF Helen Diller Family Comprehensive Cancer Center, at the University of California, San Francisco, in 2014. He believes that the power of patient data and reservoir of knowledge released by genome sequencing are shifting perceptions and providing a new perspective to research and treatment.
“People are sharing data in a way we have never seen before and that has been inspired by the Cancer Moonshot,” he told a cancer debate on KQED Radio, in California, last month.
Jan Liphardt, a bioengineering scientist at Stanford University, is seeing natural growth on his inclusive patient website, cancerbase.org, where people share information and experiences which can be used to inform lines of study and therapy pathways.
“We need this knowledge and an unrestricted flow of information so we can make the best of new therapies,” added Ms Barley. “We don’t understand when these cutting edge therapies work and don’t. We hear about examples in the news such as a six-year-old girl about to die whose tumour melted away but there are many more where the patient dies and, while we are in this phase where we don’t fully understand what is going on, the only way to get to a level of understanding is basic research and discussing it.”