Patient Empowerment in Oncology Birgit BEGER, ECCO CEO 16.09.2016

The European CanCer Organisation

ECCO’s Vision and Purpose To improve outcomes for all cancer patients in Europe through multidisciplinarity Core purpose: To provide a cohesive platform that promotes the concept and practice of multidisciplinarity across all areas of cancer care To be the united voice of European cancer professionals to address common policy issues

ECCO’s core business Quality Cancer Care Oncopolicy Promotion of concept and realisation of multidisciplinarity in cancer care Oncopolicy Promotion of policies to underpin multidisciplinarity in cancer care Provide multidisciplinary recommendations to shape policymaking in common areas of concern

ECCO’s activities Oncopolicy Quality Cancer Care ECCO Annual Congress

Openess & trans- parency ECCO’s values Evidence based Cohesive- ness Patient centred Openess & trans- parency Subsi-diarity Equality & Fairness Inclusive- ness

ECCO’s philosophy Every cancer patient deserves the best To achieve this and realise our vision of improved outcomes for all cancer patients in Europe, our work is rooted in a multidisciplinary and patient-centered approach.

Patient Centricity The nature of cancer control is changing with an increasing emphasis, fuelled by public and political demand, on patient experience during and after treatment. Community/ Patient Empowerment has been found to improve cancer-related outcomes and social acceptability of interventions Patient engagement is a fundamental of the principles and approaches of patient-centered care

Expert patients’ views Patients wishes do not always coincide with healthcare professionals’ perception of patients’ needs Care that is more patient centred brings with it not only considerations of patient choice and convenience but also the whole-person approach that patients seek Expert patient expect a partnership model of decision making and more responsibility to manage their own health and healthcare

ECCO PAC Membership reflect the breadth of predominantly European cancer patient advocacy groups Members are expert patients with expertise in the field of patient advocacy and in-depth knowledge of medicines development, support issues, information provision, regulatory/reimbursement issues, etc. Chair has a seat on the ECCO Board with voting rights and is part of the ECCO President Nomination Committee

The ECCO PAC Is represented in all ECCO committees and working groups Nominate its members to contribute to specific projects or activities making the best use of each member’s expertise Can pro-actively raise issues and suggest activities to ECCO Board At the request of ECCO member societies, it can either directly contribute experience and/or advice to their activities

Communication/reporting Chair reports to the ECCO Board on the activities of the PAC Quarterly official electronic newsletter from ECCO to ECCO PAC members on developments within ECCO PAC contributions are acknowledged with reference to individual names and their organisations as much as possible

Patient perspective in Oncopolicy ECCO PAC members comment on EU draft policy papers submitted to ECCO for consultation (e.g. Horizon2020; EU CANCON guide on cancer control; etc.) PAC involved in ECCO oncopolicy debates ECCO PAC pro-actively raises and drives issues within ECCO Oncopolicy Committee Example: the expanding role of primary care in cancer control. PAC driving position paper and primary care track at the congress

Patient perspective in ECCO congress ECCO PAC Chair is co-Chair of ECCO Annual Scientific Congress Patient experts included in scientific sessions (e.g. critical reviews of presented trials and their implication in practice and changing practice sessions) Suggestions of HCPs speakers with good understanding of patient perspective ECCO PAC in charge of the programme of the patient advocacy track (present & discuss topical issues for patients and survivors) Patient advocacy square and lounge area – where healthcare professionals and patient advocates can meet, interact, and exchange information

Patient perspective in quality cancer care ECCO PAC involved in working groups on essential requirements for quality cancer care for each tumour type (what is required to properly deliver the medical indications described in the clinical guidelines) 2016 - colorectal cancers & sarcomas 2017 – other tumour types will be defined Patient perspective in annual workshop on Methods in Clinical Cancer Research - what matters to patients in clinical trials

Thank you for your attention