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EUROPEAN PATIENTS' FORUM - OPERATING GRANT 2015-2017 [EPF FY 2015-2017] [671359] - Operating Grant
Project abstract

EPF’s 2015-2017 Programme has two overarching objectives derived from the strategic goals defined in our 2014-2020 Strategic Plan.1. To strengthen the patient perspective and impact in EU health-related policy, programmes and decision-making through evidence-based, results-oriented advocacy2. To reinforce the capacity of patients and patients’ organisations to contribute effectively to better health and social care and to enhance their accountability and mutual solidarity.These will be achieved through targeted policy, communication, membership, capacity building and partnership activities and deliverables framed around two thematic priorities: patient empowerment and equitable access to quality care, reflecting the EPF Strategic Plan and stringent governance /consultation structure. Emphasis will also be placed on growing EPF’s youth group, the needs of patients from vulnerable groups and non-discrimination on the grounds of health. The WP 2015-17 will reflect the health-related priorities of the EU Institutions and contributes directly to the implementation of the 3rd Public Health Programme Objective 3, supporting public health capacity building and contributing to innovative, efficient, and sustainable health systems; and objective 4, facilitating access to better and safer healthcare. It contributes specifically to the implementation of key EU legislation on -cross-border healthcare, patient safety, pharmacovigilance falsified medicines, clinical trials and medical devices, as well as to the EU’s priorities on eHealth and HTA. Particular focus is given to supporting capacity of patient organisations to get involved in implementation processes at national level and obtaining feedback. We will collaborate closely with health stakeholder allies in the public health arena, mutually supporting relevant dossiers. The WP’s processes, outputs, and impact, measured against our two over-arching objectives and specific indicators will be evaluated on an on-going basis.

Summary of context, overal objectives, strategic, relevance and contribution of the action

The EPF 2015 Work Programme was the first Operational Programme implementing the three-year Framework Partnership Agreement between EPF and the Consumers, Health and Food Executive Agency (Chafea). The latter is, in turn, anchored in and contributes to the EPF’s Strategic Plan covering the seven-year period 2014-2020.
EPF’s Work Programme 2015 addresses the continuum of healthcare with focus on patient-centred chronic disease management and patient empowerment. Our work contributes significantly to the objectives of the Third Health Programme, mainly objectives 3 “supporting public health capacity building and contributing to innovative, efficient and sustainable health systems” and 4 “facilitating access to better and safer healthcare”.
The Third Health Programme states that “patients need to be empowered, inter alia by enhancing health literacy, to manage their health and their healthcare more pro-actively, to prevent poor health and make informed choices. The transparency of healthcare activities and systems and the availability of reliable, independent and user-friendly information to patients should be optimised. Healthcare practices should be informed by feedback from, and communication with, patients.”(Regulation (EU) No 282/2014, recital 12) Patient-centred chronic disease management with focus on patient empowerment is also identified as a key theme in the reflection process on chronic diseases and its follow-up action, the European mapping study “EMPATHIE”, in which EPF participated. The outcomes of this study identify critical components of patient empowerment: information and health literacy; supported self-management; and shared decision-making with health professionals. A key priority in 2015 is, therefore, to identify the way forward for concrete actions to realise an EU patient empowerment strategy. Patient/family carer empowerment is an under-implemented area in patient safety (Commission’s 2nd implementation report, 2014). The experiential knowledge of patients is acknowledged as a valuable resource for health professionals and their experience should be gathered as an element of quality improvement systems. Patients involvement is crucial for instilling a “patient safety culture” in the healthcare system. (Reports of sub-groups of the PSQC WG on education in patient safety and reporting-learning systems, April 2014). In order to ensure an empowering, patient-centred design of services for individual patients and their families, it is necessary to promote patient involvement at both individual and collective (policy) levels and raise awareness of patients’ rights. In the current economic climate, it is critical to ensure that the sustainability of the EU’s future health systems is secured without compromising on the fundamental values of universality, access to good quality care, equity and solidarity (Council conclusions 2006).
The SWD Investing in Health (February 2013) stressed that the key elements in achieving the aims of “smart” and “inclusive” growth of the Europe 2020 strategy include investment in sustainable health systems and reduction of health inequalities. EPF’s 2015 work programme addresses inequalities in access to healthcare and the impact of austerity measures from the patients’ perspective, as well as impact of vulnerabilities such as access to social services, discrimination and stigma, identified by the European Parliament as affecting patients in specific (Estrela report on health inequalities, 8 March 2011). Innovation in all its forms is a crucial strategy towards developing health systems that are sustainable, equitable and offer high quality. There is not as yet a common understanding of “valuable” innovation, or indeed how it should be encouraged and rewarded. At the same time, some urgent patients’ needs are still unmet. Patients are in a position to identify the kind of innovation that would bring most value to them. The update

Methods and means

EPF is registered as an ASBL under Luxembourg law. Its activities undertaken by subsidiary under Belgian law.
a) AGM: EPF's main governance body is the Annual General Assembly (AGM) where each member is represented by one/two delegate(s). The second delegate is a young patient (age 15-25) if the organisation concerned has nominated a representative in the EPF Youth Group. Only Full Members of the EPF are entitled to vote. The AGM makes all decisions required to implement the objectives of the EPF, according to our Constitution:
b) Board: the role of the EPF Board, composed of 9 members, is outlined in the EPF Constitution. The Board may form working groups to assist in the work and direct activities of EPF.
Membership: EPF has currently 64 members which are either pan-European disease-specific patient organisations or national coalitions of patient organisations representing at least 10 different disease groups. For the full list of EPF members, please see: Full membership of EPF requires the following criteria: legitimacy, representation, democracy, consultation and transparency. The criteria for membership are further elaborated on our website: Members pay an annual fee.
The Policy Advisory Group (PAG): harnesses input and policy expertise from our members and exchanges ideas on policy issues both in terms of strategy and of content. It complements the broader EPF membership consultation procedure on specific policies. The PAG is open to all EPF members and has 14 representatives. In 2015 the PAG contributed input into various deliverables including the survey on quality of care, the position on equal treatment in education and the workplace, and our work on patient safety, notably through a member-led discussion on safe use of medication during pregnancy. It also provided input on EPF’s work in medical devices, cross-border healthcare, and the implementation of the Clinical trials Regulation. The PAG also contributed substantially to the development of the draft eHealth position paper through dedicating half a day of discussion in their second meeting of the year. In addition, it followed up on a key demand of the EPF AGM 2015 to discuss what constitutes a “bona fide” patient organisation.
Youth Group: The EPF Youth Group forms the backbone of the EPF Youth Strategy. It is currently made up of 11 young patient representatives with different chronic conditions nominated by EPF member organisations.
Accountability and consultation mechanisms: EPF has a clear procedure for consulting the membership in the development and endorsement of policy positions and statements. (Please see section 3.1 internal communications for a detailed overview). Inherent to the EPF strategic plan is a new ‘thematic ‘approach. This is reflected in the setting up of two working groups of our members, addressing the two overarching priorities of our work, patient empowerment and patient access, embracing the goals outlined above, and also re-organising our project, policy and communication work accordingly. Within the EPF secretariat (composition described below) we coordinate our
The operational and financial management of the 2015 Work Programme was centralised through a Head of Brussels Office. To ensure effective team coordination, administration, knowledge transfer, and work flow, senior management team meetings, involving the Secretary General, the Head of Office herself, the Senior Policy Adviser, and the Senior Programme Officer took take place on a monthly basis bringing in other team members as needed on specific themes.
The Secretary General was responsible for reporting to the board on a quarterly basis and consulting the elected officers on the implementation of the Work Programme 2015.
An external accounting fi

Work performed during the reporting period

The EPF 2015 Work Programme was structured around five Work Packages (WPs). The first three are thematic Work Packages that reflect our three overarching thematic priorities, i.e. patient empowerment (WP1), access to healthcare (WP2), and sustainable patient organisations (WP3). The remaining two WPs were dedicated to the management and evaluation of the grant (WP4) and communication and dissemination (WP5), respectively.
In this section we report on the work performed under the three thematic work packages (WP1, WP2, and WP3).

WP1 Patient Empowerment
Patient-centred chronic disease management with focus on patient empowerment is a key priority for EPF. “Engaged patients can change the quality of their health and influence future healthcare delivery” Vytenis Andriukaitis, European Commissioner for Health.

With input from our working group on empowerment, which met twice in 2015, we implemented the following activities:
• Publication of a consensus definition of Patient Empowerment (briefing paper)
• Publication of a position paper on Lay summaries of clinical trial results
• Participation in the European Medicines Agency (EMA) working group to develop draft EU guidance on lay summaries
• Development of a position paper on information to patients/informed consent in the new EU Clinical Trials Regulation (publication Q1 2016)
• Talks on patient empowerment in the context of health literacy at events including European Parliament STOA (health literacy and technology) and the European Health Literacy Conference.

The Patient Empowerment Working Group met in April and November. The group reviewed the draft Charter on Patient Empowerment. It also contributed to the consensus definition of patient empowerment and related concepts, published as a briefing paper. The group also developed its work plan for 2016, which will include a discussion on patients’ rights following the publication of the Commission’s mapping study, starting to develop a toolkit on patient empowerment primarily for patient organisations.

EPF continued to work towards more transparency and patient-friendliness in clinical trials. The European Medicines Agency (EMA) delayed its anticipated consultation on sharing patients’ data, so EPF took the opportunity to develop a position statement on the lay summaries of clinical trial results. Our paper formed the basis of subsequent work on draft EU guidance by UK-led working group, in which EPF also participated. We also developed a draft position paper on the implementation of informed consent under the Regulation, which will be adopted in early 2016.On health literacy, EPF continued its commitment to work within stakeholder coalition comprising health professionals, researchers and industry. Activities focused on awareness-raising among EU policy-makers, including an event at the European Parliament STOA to discuss the implications of new technologies for health literacy, attending the launch of the Commission’s mapping study (commissioned set up following the request of the informal coalition in 2014), and speaking on empowerment at the 3rd European Health Literacy Conference.
On pharmaceuticals, EPF continued its long-standing collaboration with the EMA through our membership of the Working Party with Patients and Consumers (PCWP) and our representation on the Pharmacovigilance Risk Assessment Committee (PRAC). We supported the EMA in identifying patient reviewers for patient leaflets and in disseminating information from EMA to the patient community. This year, EPF co-organised a session focusing on patients’ information needs in a meeting on biosimilar medicines hosted by the Commission DG GROW, which identified necessary actions to create more awareness among patients and professionals about the therapeutic options offered by biosimilars. EPF also contributed to a high-level conference on personalised medicine under the Luxembourg EU Presidency, and commented on the Council conclusi

The main output achieved so far and their potential impact and use by target group (including benefits)

In this section we would like to highlight some of the key achievements resulting from the implementation of our 2015 Work Programme.
In consultation with the empowerment working group, we developed a consensus definition of patient empowerment. We believe strongly this represents a big achievement which closes a long-existing gap in terms of framing and understanding the complex and often ill-interpreted concept of “patient empowerment”.
We also developed and published a patients’ position paper on the communication of clinical trials results (the “lay summaries” foreseen in the new EU Regulation), and subsequently participated in the development of an EU Guidance for the implementation of this. We also developed a position paper on the provisions on informed consent and information to patients in the new regulation. The Patient Empowerment Working Group met twice and contributed to both emerging and current relevant policy issues around patient empowerment (including eHealth).
We continued our support of the European Medicines Agency within the Working Party with Patients and Consumers (PCWP) and the Pharmacovigilance Risk Assessment Committee (PRAC). We supported the EMA in identifying patient reviewers for patient leaflets and disseminated information from EMA to the patient community through our communication channels. We also supported the organisation of an event on biosimilar medicines hosted by DG GROW and identified action areas to ensure awareness among the patient community about this type of medicines, which will be addressed at a follow-up meeting in 2016.
The work of the working group on access resulted in the adoption of a common definition of access to healthcare, which provides a basis for our future activities in this area including the survey on access to be carried out in 2016 as part of our 2016 Work Programme, and recommendations on indicators which can be used to contribute to debates on health system performance assessment. The input of the working group was also integrated in our response to the public consultation on “access to health services in the EU”. Through the Riga Roadmap, we collaborated with key health stakeholders, the EPHA, EGA (now Medicines for Europe), and EFPIA to recommend jointly strategic directions to improve access to healthcare in the European Union.
The development of a position on tackling discrimination in education and the workplace allowed us to identify good practices and collect information about activities, events and project carried out by our member organisations in this area. This work contributed into our application for the organisation of a workshop focusing on young patients and employment at the European Youth Event 2016.
The development of the position paper also led EPF to build a relationship with the European Agency Eurofound, which participated to the debate on this topic with the EPF Policy Advisory Group. Our efforts in 2015 to disseminate our position paper “Healthcare for all” produced in 2014 also led to new opportunities for partnership: EPF met with the Social Platform, PICUM (representing undocumented migrants), and ILGA Europe (representing lesbian, gay, bisexual, trans and intersex people). The two latter organisations subsequently provided input into our patient empowerment campaign. EPF was also invited to co-sign an open letter to the EPSCO council concerning the debate on migrant health with 24 other organisations. We also collaborated with the EUgenMed project in order to provide the patients’ perspective on gender and medicine.
Our continuous input on medical devices led EPF to be invited to contribute the patients’ perspective to a task force on medical devices and various events co-organised by the European Forum for Good Clinical Practice (EFGCP) and MedTech Europe. We also contributed to the British Journal of Medicine’s blog following the publication of our latest position.
EPF has been closely involved in EU

Achieved outcomes compared to the expected outcomes

The impact of EPF’s work can be considered substantial – but in order to understand it, a longer perspective needs to be adopted than one year (duration of one operating grant).
Particularly in the area of policy, impact can take some time to manifest itself. A distinction should also be made between influence on specific legislation and wider advocacy to bring the patient perspective to the fore in different policy areas, and impact on the thinking and discourse of political decision-makers as well as stakeholders, which is difficult to capture within quantitative indicators but can nevertheless be very powerful.
EPF was successful in engaging with the Latvian presidency, as demonstrated by EPF’s participation in the high-level conference “Universal health: Investing in Health and Wellbeing for All” in Riga, and the publication of the Riga roadmap. We were also successful in engaging with the Luxembourgish Presidency as access to personalised medicines for patients was the theme of a high level conference at which EPF was invited to speak, and our input was reflected in the draft Council conclusions.
Our advocacy work on key policy areas usually includes specific policy recommendations. These may sometimes be reflected within specific pieces of ‘hard’ legislation (e.g., Clinical Trials, Cross-border Healthcare, etc.) which Member States will be obliged to transpose and implement. In other cases, such as in patient safety or quality of care, or equity of access, they can inform policy-making at European and national/local levels by showing to decision-makers where patients’ real concerns and priorities lie, and proposing concrete solutions.
The work on “lay summaries” of clinical trials results is a particularly tangible example, having direct impact at EU level (and by implementation, at the national level). Our work on patient safety, as a slightly different example of a policy area that works mostly through “soft law” has influenced the positions of the European Parliament as well as the Council Conclusions, which although not enforceable as such, do carry considerable political weight and are often used as points of reference. They are also disseminated to other stakeholders, including healthcare professional groups and academic bodies, which also have influence on policymaking either internationally or in their own countries. Fellow health stakeholders therefore are multipliers of the results of EPF’s work.
EPF was successful in promoting the active involvement of patients’ organisations in the monitoring of the implementation and functioning of the cross-border healthcare directive as demonstrated by the reports of the regional conferences and workshops, the targeted attendance and active engagement by national contact points at the EPF high level conference on cross border healthcare in July, and the speech of Commissioner Andriukaitis acknowledging the important role of patients. Invitations received to present the results to various expert meetings, including the National Contact Points network and representatives of national health ministries, also demonstrated impact at EU level.
We continued to engage with the Multi-stakeholder Partnership on Access (PACT) in 2015 and contributed to ensuring its sustainability. MEPs launched successfully an Interest group on access to healthcare with co-chairs from across political parties and support from about 30 MEPs. The PACT was elected by participants as the most successful follow up to the Vilnius Declaration during the high-level conference “Universal health: Investing in Health and Wellbeing for All” in Riga. We contributed to promoting the patient perspective in a session organised by the PACT at Gastein in which 3 patients with multimorbidity were invited as speakers. PACT also achieved progress in mapping access barriers through a survey addressed at various stakeholders including patient organisations across EU Member States. We con

Dissemination and evaluation activities carried out so far and their major results

The dissemination activities are underpinned by our three long-term objectives of communicating to inform, to engage, and persuade. EPF communication strategy focused on clear, meaningful, and targeted messages with the two-fold aim to persuade policy-makers and promote engagement of the patient community.
In line with the output indicators related to the communication strategy, we issued in 2015 11 electronic newsletters that were sent across to 4300 subscribers. These monthly publications showcase EPF’s recent activities and put the spotlight on our members’ initiatives. In total these newsletters provided for 90 articles, both disseminated through direct email and posted on our website. We also published 26 posts on our dedicated blog.
The Annual Report, a major document both for internal and external dissemination, has been distributed in the course of 2015. The report has been printed in 500 copies and disseminated online as well.
Videos and visual communications are an important part of our identity. In 2015 EPF produced two videos, one on patient empowerment and one specifically targeted to European policy makers. Both videos have been disseminated through our newsletters and social media and are available on our YouTube channel. In terms of social media, 2015 saw a consolidation of our audience reach on Twitter and Facebook. Our Twitter handle, @eupatientsforum gained 1009 new followers and EPF tweets accounted for a total of 490,100 impressions. On Facebook, our page EuropeanPatientsForum saw an increase of 2183 likes, to reach 5112 likes by the 31st of December 2015. Our presence on social media helped us to ensure enhanced coverage of events, with live-tweeting publicity. Three different events were live-tweeted: the launch conference of the Patient Empowerment Campaign, a conference on cross-border healthcare and the inaugural meeting of the MEP Access to Healthcare Interest group.
We also produced three factsheets related to EPF 2015 work programme and our policy activities. The topics covered were patient safety, quality of healthcare, and cross-border healthcare. These factsheets were disseminated and distributed at different events attended by EPF and via our membership.
With regard to press releases, we have adapted slightly our strategy to focus more on targeted press clippings rather than general press releases, resulting in issuing three press releases in 2015, while EPF has been quoted in 50 different publications.