atients are ready to accept much higher levels of risk than medical experts believe, if the benefit of a treatment is clearly described and likely to happen, according to a leading patients group.
Patients also need the treatment’s risk information to provide “an educated guess on worst-case scenario and likeliness for this to happen,” Christoph Thalheim, secretary general of the European Multiple Sclerosis Platform, told the European Health Forum Gastein, the European Union (EU) health congress held this month in Germany. Patients are involved in several European Medicines Agency (EMEA) working parties and positive lessons can be drawn from such active participation, he said.
Oncologists attending the congress also called for new initiatives and more coordinated policies to tackle cancer, which could affect as many as 15 million EU citizens by 2020. While there have been national-level efforts to promote public-private partnerships in cancer research, “surprisingly little thought” has been given to international public-private partnerships, yet this could considerably improve research, suggested Panos Kanavos, senior lecturer at London School of Economics. “There is also a need for a holistic regulatory approach to foster innovation in the area of oncology,” said Dr Kanavos, who presented a new study at the congress which calls for an expanded role in cancer research for governments through direct and indirect incentives, as well as a re-think about regulation and pricing and reimbursement systems.
Creating a more conducive environment for drug development will require “the right mix of incentives for innovation, an enhanced role for government with regard to incentives as well as a rethink of how regulation works and how systems of pricing and reimbursement operate,” added co-author Richard Sullivan, chair of the European Cancer Research Managers Foundation.
Cancer experts also pointed out that while the European Research Council has been created to stimulate fundamental research, Europe lacks a strategy for filling the gap between basic disciplines and clinical research.
“We European scientists punch above our weight, compared to the rest of the world, but our cure rates for cancer are poorer. This is in part due to extraordinarily poor collaboration between scientists and doctors, and unacceptably inadequate communications among those cancer professionals and patients,” said Professor Gordon McVie of the European Institute of Oncology in Italy.
What is needed is “a one-stop shop, a Eurocancergoogle, perhaps, through whose portal anyone interested in getting accurate information about a cancer gene or a cancer trial will glide. Only when we all start communicating with each other will we realise that Europe already has the tools within its grasp to defeat cancer,” said Prof McVie.