The European Cancer Patient’s Bill of Rights, update and implementation 2016

Abstract

In this implementation phase of the European Cancer Patient’s Bill of Rights (BoR), we confirm the following three patient-centred principles that underpin this initiative:The right of every European citizen to receive the most accurate information and to be proactively involved in his/her care.The right of every European citizen to optimal and timely access to a diagnosis and to appropriate specialised care, underpinned by research and innovation.The right of every European citizen to receive care in health systems that ensure the best possible cancer prevention, the earliest possible diagnosis of their cancer, improved outcomes, patient rehabilitation, best quality of life and affordable health care. The key aspects of working towards implementing the BoR are:Agree our high-level goal. The vision of 70% long-term survival for patients with cancer in 2035, promoting cancer prevention and cancer control and the associated progress in ensuring good patient experience and quality of life.Establish the major mechanisms to underpin its delivery. (1) The systematic and rigorous sharing of best practice between and across European cancer healthcare systems and (2) the active promotion of Research and Innovation focused on improving outcomes; (3) Improving access to new and established cancer care by sharing best practice in the development, approval, procurement and reimbursement of cancer diagnostic tests and treatments.Work with other organisations to bring into being a Europe based centre that will (1) systematically identify, evaluate and validate and disseminate best practice in cancer management for the different countries and regions and (2) promote Research and Innovation and its translation to maximise its impact to improve outcomes.

Taking patient reported outcomes centre stage in cancer research – why has it taken so long?

“…Debates on cancer policy are inevitably going to become more complex. However, a balanced approach that involves professionals, patients and is informed by Patient Reported Outcome Measures is much more likely to generate progress in cancer research and cancer care development that improves outcomes, patient experience and quality of life [ 1 ].…”

“…On the other hand simple measures around public awareness, access to therapy, ensuring that well established best practice is used widely across healthcare systems and across different countries, and the appropriate delivery of timely diagnosis and multidisciplinary specialised care have proven potential to improve outcomes. It has been recently suggested [ 1 ] that if we made proper use of well established existing good practice, we could continue to improve the survival of cancer patients from the approximately 50% long term survival achieved in many European countries towards the 60% long term survival that is achieved through best practice in some European countries. It has also been estimated that if we make well planned and effective use of research in new diagnostic and treatment approaches derived from existing technologies, then it is realistic to aim for a 70% long term survival or even better in as little as two decades.…”

The Oncology Data Network (ODN): A Collaborative European Data-Sharing Platform to Inform Cancer Care

“…Collectively, these insights and innovations are driving the need for a highly personalized approach to treatment, which is transforming routine practice and brightening the outlook for people with cancer globally . Across all cancers, long‐term patient survival now exceeds 50% in many developed countries .…”

European Cancer Organisation Essential Requirements for Quality Cancer Care (ERQCC): Lung cancer

“…The European Cancer Concord (ECC), a partnership of patients, advocates and cancer professionals, recognised major disparities in the quality of cancer management and in the degree of funding in Europe. Its European Cancer Patient's Bill of Rights is a patient charter that underpins equitable access to optimal cancer control, cancer care and research for Europe's citizens [1].…”