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European Patients' Forum [EPF_FY2012] [20113301] - Operating Grant
Mission and vision of the operating grant holder

Patient-centred, high quality, equitable healthcare for all patients throughout the EU.
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.
-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
Additional values informing our work are:
- We foster the meaningful involvement of patients through empowerment by breaking down attitudinal barriers regarding the place of patients in healthcare and society as equal citizens
- 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.
Our vision and core values inform EPF`s policy and programme work, external communications and collaboration.

Strategic objectives and specific activities

EPF`s goals as stated in the Strategic Plan are as follows:
To promote equal access to best quality information and healthcare for EU patients, their informal carers and families
To ensure meaningful patient involvement in EU health-related policy-making, programmes and projects.
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).
To encourage inclusive, effective and sustainable representative patient organisations.
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 networking. 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
b) providing on-going support to patients and patient organisations all across the EU.
In relation to a) 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 EC representatives, MEPs and representatives of the Council through consultations, meetings and campaigns
- Close collaboration with all key health stakeholders - on position papers, joint events, projects and joint actions
- Involvement in many EU-level platforms, expert advisory groups and forums to represent the wider European patient community.
In relation to b) our key activities are:
- Supporting our membership through targeted activities, including capacity building activities particularly in new member States and their involvement in policy work and sharing of good practice in the regulatory, research and legislative environment
- Engaging with, supporting 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
- 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.
Policy areas are prioritised by our membership and reflect the EU healthcare environment and include among others: patient safety and quality of care, health inequalities, access to therapies, clinical trials, medical devices, information to patients/health literacy, Health Technology Assessment, innovation and eHealth (
We are extending our activity to new policy strands, notably the needs and challenges of older patients, anti-discrimination and access to healthcare for vulnerable groups such as migrants and ethnic minorities. We are also focusing on young patient needs and child-friendly healthcare in cooperation with Council of Europe.
Targeted activities aimed at strengthening mutual understanding between young and older patients will be implemented in 2012 under the framework of the EU Year of Active and Healthy Aging and Intergenerational Solidarity.

Expected outcomes

Here we present objectives and activities of our 2012 Annual Work Plan (AWP) with a focus on those included in our Operational Work Programme (OWP).
Obj. 1 Building Capacity
- AGM+Youth Meeting+Strategic Planning Seminar -Meetings: 4 Board, 6 elected officers, 6 Secretariat
- 2 PAG Meetings to give guidance on priority policy areas
-Supporting EU`s patients
- Regional Advocacy Seminar,targeting Mediterranean EU MS and Candidate Countries -Support to our members in participating in Structural Funds 14-20 design, and transposition of key EU directives -Local meetings with national patient coalitions members of EPF
-Involving youth
- II Congress of the Youth Group Meetings with other youth groups
-Expansion of membership
- Meetings with national patient coalitions not yet members of EPF (HU, CZ)

Obj. 2 Consolidating EPF Policy Impact
-Continuing to focus on the following policy areas:
- Reflection process on EC Communication on chronic diseases -Quality of care and patient safety-continuing to participate in the EC PS&Q Working Group,Joint Action on Quality & Safety,Survey on Patient Safety and collaboration with WHO -Monitoring of the implementation/transposition of EU Directives on Falsified Medicines, Cross-Border Healthcare and Pharmacovigilance -Participating at all levels in the EU Innovation Partnership on Healthy and Active Ageing -Position on the Directive on implementing the principle of Equal treatment between persons irrespective of religion or belief, disability, age or sexual orientation/tackling discrimination -Working closely with EU institutions on EC proposal on information to patients -Health inequalities:
input in EU-level actions on health inequalities including EC Communication Solidarity in health; involvement in organising the "Innovation in Healthcare Conference" (DG RTD, SANCO, REGIO and ENTR); work on discrimination in health including access to healthcare of vulnerable patient groups in partnership with relevant NGOs/bodies -Work with the European Medicines Agency: representation in the CHMP/PCWP and Managing Board; coordinating role for patient involvement; disseminating information on medicines regulatory processes to patients -Engage in the revision of the Clinical Trials Directive and the recast of the Medical Devices Directive -Developing a position on the Professional Qualification Directive - Innovation and personalised medicine to foster patient-centred innovation -As partner in the EC Initiative on corporate responsibility in Pharmaceuticals we will continue to be involved in the steering and project groups within the Access to medicines in Europe and "Ethics and Transparency" and contribute to the revision of the Transparency Directive -EU Health Strategy 14-20: participation in the policy-making on the next EU programming period,PHP,FP8,Structural Funds,ICT and PROGRESS -Continuing cooperation with DG Research and FP7 Health NCPs to strengthen measurably patient involvement in FP7 using the Value+ tools
-Other areas include: -Structural Funds 2014-2020, Health Technology Assessment, eHealth, Health workforce, Youth policies, Global Health.
-We will hold the following events/meetings:
-High-level meetings with representatives of the DK and CY Presidencies and with the IE and LT governments in preparation for their 2013 Presidencies -Thematic Conference-outside the OWP, subject to be decided by the Board in July 2011

Obj. 3 Feeding Projects` and Patients` evidence into policy
-Continuing involvement in projects
-Develop a Value+ follow-up programme on capacity building for patient organisations -outside OWP -Patients` evidence-based workshop on areas identified by membership.

Obj. 4 Building Powerful Communications/Partnerships
With the recruitment of a communications officer EPF will put place a communication strategy that reinforces our outreach. Activities under this objective will reach a variety of health stakeholders.

Expected Outcomes: see section 2.9.

Start date: 01/01/2012
End date: 01/01/2013
Duration: 12 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 568 488,00
Portfolio: Interest groups