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A Virtual Meeting on Informed and Shared Decision-Making, between cancer patients, caregivers and healthcare professionals, was held on January 18th, 2023, organized by the European Cancer Organisation (ECO) in collaboration with the Anticancer Fund and connected to the Inequalities Network.

INCA Executive Director and member of the ECO Patient Advisory Committee Teodora Kolarova voiced the neuroendocrine cancer patient perspective in the panel discussions on shared decision-making and personalized patient information.

The discussions focused on the right of cancer patients to be involved in the decisions they will live with every day. The INCA leader brought forward the point that an honest dialogue between healthcare professionals and patients as well as the caregivers should be fostered on the issue of the quality of life as a priority in the cancer care. “Patients are experts on their personalities and they have the right to be involved in deciding the priorities of their life. Healthcare professionals have to view patients more holistically”, said Teodora Kolarova.

She referred to a recent research published in the Journal of the National Comprehensive Cancer Network reporting that only 30% of patients with advanced neuroendocrine tumors (NETs) say their top goal for treatment is living longer. The remaining patients selected other specific treatment goals as most important, such as maintaining the ability to do daily activities, reducing or eliminating pain, or reducing or eliminating symptoms like fatigue. 66.7% of those surveyed agreed with the statement: “I would rather live a shorter life than lose my ability to take care of myself.”

The important role of the patient organizations in supporting the collaborative thinking in the decision-making process was also noted. Patrycja Rzadkowska, member of the ECO Patient Advisory Committee and Pancreatic Cancer Europe, highlighted the mission of the patient organization as the link between science and patients in providing credible information – especially in an internet environment with a lot of unscientific and misleading information about cancer.

The coaching role of the nurses in the shared decision-making process was discussed.

The panel included Kathy Oliver, Co-Chair, ECO Patient Advisory Committee, and Chair & founding Co-Director of the International Brain Tumour Alliance (IBTA), Guy Buyens, Medical Director, Anticancer Fund – Contributor to ECO’s Community 365, Andreas Charalambous, President, European Cancer Organisation, Stine Rauff Søndergaard, Center for Shared Decision Making & Dep. of Clinical Oncology, Vejle Lillebaelt University Hospital of Southern Denmark, Nicolò Battisti, Co-Chair, Inequalities Network, European Cancer Organisation, and President, International Society of Geriatric Oncology (SIOG), Csaba Degi, President-Elect, European Cancer Organisation, and Director, International Psycho-Oncology Society (IPOS), Patrycja Rzadkowska, Member, Patient Advisory Committee, European Cancer Organisation, and Member, Pancreatic Cancer Europe, Ciarán Nicholl, Head of the Health in Society Unit, European Commission’s Joint Research Centre.

Useful resources which were shared: