News from patient representatives - I2L, ECPC and Friends of Cancer Research

The role of the associations representing patients is increasing. In various ways, attention is requested for the wishes of the patient in innovation choices, regulation and treatment. Here attention for 3 recent initiatives and developments.

Last week the annual conference of Inspire2 Live (I2L) took place. Like every year an inspirational and very instructive meeting. Peter Kapitein (co-founder of I2L) presented his view on healthcare and the discussion about availability of patient data. In his recent book "How did it come to that? A fresh look at health care "is to be read. Important other contributions were from Aled Edwards, who presented a working example of public-private drug development and Ernst Hafen who uses the traditional cooperative structure for the realization of a publicly controlled storage and sharing of health data.

A new report from the European Cancer Patient Coalition (ECPC) supports innovation in oncology. The report includes more than 30 evidence-based policy recommendations for six health areas - innovative medicines, diagnostics, radio-oncology, surgery and care pathways. The following is reported about diagnostics: "the adoption of diagnostics is determined not only by the regulatory approval but also by reimbursement and evidence in clinical studies and real world studies". Therefore, the ECPC recommends that national governments promote the use of diagnostics [in healthcare] by implementing the European directives in favor of reimbursement for diagnostics, at least if it is supported by clinical research. The European commission and council are asked to ensure that patients and physicians become better acquainted with biomarkers and other innovative diagnostic tools.

Finally, the Friends of Cancer Research, a large private partnership in the US, is trying to get the attention of President Trump to continue the part of the Precision Medicine Moonshot program in which the FDA can go an Oncology Center of Excellence (OCE) extend. Elen Sigal, chairman and founder of Friends of Cancer, is worried in an open letter to Trump that his planned public stop at the government will make the planned growth of the OCE impossible.
The above three recent developments make it clear that patient organizations can contribute in many ways to the necessary attention for changes in the health care system.