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Patient Empowerment
in Oncology
Birgit BEGER, ECCO CEO
16.09.2016
1
The European CanCer Organisation
2
ECCO’s Vision and Purpose
Vision:
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
3
ECCO’s core business
Quality
Cancer Care
Promotion of concept and
realisation of
multidisciplinarity in cancer
care
4
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
5
ECCO’s values
Evidence
based
Openess
& transparency
Patient
centred
Equality
&
Fairness
6
Cohesiveness
Subsidiarity
Inclusiveness
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
9
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
14
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
15
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
17
Thank you for your attention
18