Our mission is to be the collective patients voice at EU level, manifesting the solidarity, power and unity of the EU patients movement, and provide a strong and united patients voice to put patients at the centre of EU health policy and programmes.
Our vision is patient-centred, high quality, equitable healthcare for all patients throughout the EU.
Core values/guiding principles as agreed in the Strategic Plan:
-We are patient-centred and right-based
-We combat discrimination on the grounds of illness and address health inequalities from the perspective of patients
-We advocate a holistic approach to healthcare issues that includes the social, economic, cultural, environmental and mental health agenda for patients, carers and families
-We foster the empowerment of patients, carers and their families by breaking down attitudinal barriers and prejudice regarding patients place in society as equal citizens
-We consult and build consensus within our membership to address the EU policy issues that have an impact on the patient community
-We are an independent organisation, transparent in all our operations-financial, policy, communications
-We are an open and inclusive organisation and strive to ensure that our work also reflects the opinion of potentially marginalised and under-represented patients, carers and families
-We have a strong commitment to gender equality
-We encourage effective, inclusive and sustainable patient organisations throughout the EU
-We are committed to giving a voice to underrepresented patients, including young patients and reaching out to all ethnic and cultural patient groups
-With regard to ethical issues, EPF respects recognised European and International instruments protecting human rights.
These core values lie at the heart of our organisation - they define who we are, how we work and what we stand for. They not only inform our advocacy/campaign and programme work, but also guide the way we build alliances and partnerships. Our communication strategy ensures that these values are effectively shared with the patient community
EPF`s goals as stated in the Strategic Plan are as follows:
GOAL 1 EQUAL ACCESS FOR PATIENTS: To promote equal access to best quality information and healthcare for EU patients, their informal carers and families
GOAL 2 PATIENT INVOLVEMENT: To ensure meaningful patient involvement in EU health-related policy-making, programmes and projects.
GOAL 3 PATIENTSPERSPECTIVE: To ensure a patients perspective, including issues around human rights and quality of life, is heard in developments at the EU level on health economics and health efficacy (health, wealth and equity).
GOAL 4 SUSTAINABLE PATIENT ORGANISATIONS: To encourage inclusive, effective and sustainable representative patient organisations.
GOAL 5 PATIENT SOLIDARITY: To nurture and promote solidarity and unity across the EU patients` movement. No patient organisation is too small to contribute to our work.
To advance these strategic goals we operate in a number of fields of action that focus on EU level advocacy/campaign work, exchange/dissemination of good practice and building alliances and partnership. These goals reflect the crucial role and responsibility of EPF in:
a) Acting as the key interlocutor representing the European patient community to the EU institutions and to other key health-related actors at EU level.
In relation to this role our key activities are:
-Development of an evidence-base on patients` experience as well as identification of and monitoring the needs and expectations of patients to feed into EU health policy
-High level presence and constructive input at major external health events
-Building a dialogue and cooperation with Members of the European Parliament, representatives of the European Commission and the Council through consultations, meetings, events, and campaigns
-Close collaboration with all key health stakeholders on position papers, joint events, and projects
-Involvement in many EU-level platforms, expert advisory groups and forums to represent the wider European patient community.
b) Providing on-going support to patients and patient organisations all across the EU.
In relation to this role our key activities are:
-Supporting patient communities across the EU through targeted activities, including capacity building activities particularly in new EU Member States (see EPF Regional Advocacy Seminars (RAS) in LT 2008, BG 2009, HU 2010, RO 2011 and PT 2012, and the EPF Capacity Building Programme launched in 2012) and their involvement in policy work and sharing of good practice.
-Engaging with and promoting the establishment of national patient coalitions where not yet in place in current and candidate EU MS.
EPF works on key policy areas linked to the goals and fields of actions. Our policy work is shaped by its over-arching goals:
-Promotion of patients rights and quality of life
-Meaningful involvement of patients in all areas of EU policy, programmes and projects with an impact on health
-Promoting equity of access, addressing health inequalities and the sustainability of equitable healthcare systems from the patients perspective.
Following the outcomes of the 2012 Strategic Planning Seminar, a key focus in 2013 will be to work closely with our membership to define the new framework that will provide the direction of EPF goals and objectives for the next 7-year period. A key objective for 2013 will be, therefore, to involve our members in identifying and prioritising policy and programme areas to reflect the EU policy and healthcare environment especially at a time when Europe and public health services have been severely affected by a long-lasting wide-scale economic crisis.
The following is an overview of objectives and activities of EPF 2013 Annual Work Plan (AWP) with a focus on those related to the Operational Work Programme (OWP).
Obj. 1 Reinforcing Capacity
Supporting EU patients:
-Regional Advocacy Seminar EU Conference under the Irish EU Presidency to mark EPFs 10th Anniversary (outside OWP) Support on understanding, awareness and transposition of key EU Directives/policies Implementing second stage of EPF programme on capacity building for patient organisations (not OWP)
-Youth Spring Meeting (at AGM) III Meeting of the Youth Group
Reinforcing EPF membership:
-Meetings with national patient coalitions not yet members of EPF Support to undertaking activities in events linked to the 2013 European Patients Rights Day Support to EPF members through a dedicated Membership Officer
-AGM+II Strategic Planning Seminar Meetings: 4 Board, 6 elected officers, 6 Secretariat
Obj. 2 Strengthening Impact of Patients Perspective
See AWP 2.2.1 for details.
Patient-centred, sustainable and equitable health systems:
Involvement in the EU strategy on chronic diseases; adoption of policy recommendations on patients involvement/patient-centred chronic disease management
- Participation in the policy-making on the next EU programming period (14-20)
- engage the patient community in current development at EU level regarding the health workforce (e.g. Professional Qualifications Directive) , healthcare professionals/ patients relationship, Patient-centred innovation:
- Participating in the governance and monitoring of the EU IP AHA and in the implementation of certain actions ( health literacy, nutrition)
- Development of an EPF position paper on eHealth
- Contribution to personalised medicine initiatives
- raise awareness of patient organisations on the proposed Data Protection Regulation/sharing of patient data and cooperate with other actors to input an health sector perspective into the review
- Continuing cooperation with DG Research to strengthen patient involvement in projects/applying the same cooperation model with DG SANCO and DG INFSO
Health inequalities and access to healthcare:
- Continue promoting Health Literacy as a critical strategy for the realisation of patient-centred healthcare and health inequalities
- Monitoring progress in the area of health inequalities, including impact of financial crisis and equity of access to healthcare within the EU
- Following up on the outcomes of the EC initiative on corporate responsibility in pharmaceuticals, and contribute a patient perspective into debates on pricing and reimbursement at EU and Member States level, including the revision of the Transparency Directive
- Continued work on information to patients and health literacy
-Position on achieving equal treatment for patients with chronic diseases and work on vulnerable groups access to healthcare
- Promoting EPF position paper on the needs and rights of older people with chronic diseases Undertake advocacy, capacity building and informative work on Structural Funds, through an EPF Toolkit.
Ensuring the safety and quality of healthcare:
-Continue to work with partners and Member States through inter alia the EC Patient Safety & Quality of Care Working Group focusing particularly on the implementation the Council Recommendation on patient safety and healthcare associated infections
- Active engagement with stakeholders to advocate patient involvement in Clinical Trials to provide patient knowledge in the revision of the EU Clinical Trials framework
- Continue engaging in debates around the legislative proposals for a revised regulatory framework on medical devices
Implementation of EU health legislation:
Monitoring implementation/transposition of EU Directives on Falsified Medicines, Cross-Border Healthcare and Pharmacovigilance: Awareness raising for the patient community on issues related to this such as information to patient, counterfeiting, medicine safety, and healthcare quality.Advancing policy outreach through partnerships and collaborations:
-Awareness raising and advocacy on patients fundamental issues and rights through the launch of a new Manifesto
-Meetings with representatives of the IE and LT Presidencies and the GR and IT governments
-Participation in EMA Working Party with Patients` and Consumers` Organisations
- Involvement in a number of agencies, think-tanks and advisory panels (see 2.2.2 of AWP) Consolidate relationships and cooperation with WHO, OECD,FRA, UNICEF and other patient groups and health stakeholders (see 2.2.2 of AWP)
Obj. 3 Feeding Projects and Patients evidence into policy
-Continuing involvement in current projects and new ones (not OWP)
-Patients evidence-based workshop.
Expected Outcomes: see section 2.9