1. Patient Empowerment in Oncology Birgit BEGER, ECCO CEO 16.09.2016

2. The European CanCer Organisation

3. 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

4. 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

5. ECCO’s activities
Oncopolicy
Quality Cancer Care
ECCO Annual Congress

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

7. 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.

8. 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

9. 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

11. 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

12. 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

13. 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

14. 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

15. 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

17. 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)
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

18. Thank you for your attention