The proposal concerns the EPF 2017 work programme arising from the three-year framework agreement between EPF and Chafea in the framework of the EU Public Health Programme 2014-2020. EPF’s Work Programme (WP) 2017 is the third annual programme implementing the three-year Framework Partnership Agreement signed in 2014 with Chafea. As such, the 2017 WP builds on and takes forward the outcomes of our WP 2015 and WP 2016. The 2017 WP will contribute specifically to addressing the six strategic goals expressed in our Strategic Plan 2014-2020. (www.eu-patient.eu/whatwedo/ ).
Our 2017 WP addresses the continuum of care with focus on patient-centred chronic disease management, patient empowerment, and equitable access to high quality health and social care. The WP contributes significantly to the objectives of the Third Health Programme, in particular Obj. 3 “supporting public health capacity building and contributing to innovative, efficient and sustainable health systems” and Obj. 4 “facilitating access to better and safer healthcare”.
EPF 2017 WP revolves around four operational objectives:
OBJECTIVE 1 - To promote the development and implementation of policies, strategies and services that foster the empowerment of patients and patient organisations.
OBJECTIVE 2 - To promote the development and implementation of policies, strategies and healthcare services that maximise access and reduce health inequalities across the EU.
OBJECTIVE 3 – To reinforce the capacity of patients and patient organisations to contribute effectively to better health and social care for all patients in the EU, while enhancing their accountability and mutual solidarity.
OBJECTIVE 4 – To actively engage with the wider health stakeholder community and policy makers to advance the patient-centred agenda at both national and European level.
At macro level, the operating grant funding led to a strengthening of the patient perspective in EU health policy, by supporting EPF as the credible, united and influential voice of patients across the EU and as a key interlocutor on cross-cutting issues affecting all patients. It enabled EPF’s governance and consultative structures to function optimally. In 2017, through a leadership meeting, we were able to undertake a Mid-Term Review of our strategic plan (2014-2020), to ensure maximum alignment with the external health policy environment and indeed the objectives of the health programme.
More specifically, the following are key examples of our contributions.
EPF has been calling for several years for the patient’s experience of care to be adopted as a key metric in assessing health systems performance (e.g., through our input into the EXPH opinion on quality of care, 2014). We saw recognition of this in January 2017, with the political endorsement of the PaRIS initiative by OECD member states – which include the EU member states – and a dedicated project funded by the Health Programme. This success cannot be attributed solely to EPF’s advocacy, we believe our voice has been influential and we continue to engage closely with OECD in advancing this work.
In the context of the Clinical Trials Regulation, in 2017 EPF built upon work of previous years, (development of a position paper on lay summaries of clinical trials, followed by involvement in drafting EU guidelines, published this year), through multi-stakeholder engagement in concrete steps towards implementation, involving the European Medicines Agency and industry. Our continued work will support the effective preparation of lay summaries, and awareness and insight by patient communities across Europe of their relevance and availability, as the Clinical Trials Regulation comes into force.
Our body of work on cross-border healthcare, cited in the Commission’s Report to Council in 2015, continues to be a point of reference for the Commission as well as the European Parliament: in 2017, in the context of our roundtable to explore implementation, we worked with key interested MEPs , resulting in a resolution and debate in a European Parliament Plenary Session. The Commission has closely followed and contributed to our events, and consulted EPF for inclusion of the patients’ views and evidence into follow-up implementation reports.
Our recommendations on key competencies for patients and families to empower them in patient safety address a clear gap in the implementation of the 2009 Council Recommendations on Patient Safety. Previously, no guidance existed in this area, and policy makers and the health stakeholder community alike have welcomed this initiative as integral to wider efforts on patient safety.
EPF continued to be a strong voice in promoting Health literacy. It was mentioned in the 2017 outcomes document of the Gastein Forum. Moreover, the Council conclusions on digital health of 28/11/2017 referred to health literacy as a prerequisite in the design and implementation of digital tools to avoid exacerbating health inequalities, and fulfilling the potential of digital tools as aids to enhancing health literacy.
The EPF campaign on access to healthcare has been successful in leading to an increased debate on universal health coverage by 2030 at European level with 5 MEPs championing the campaign within the European Parliament. EPF’s Roadmap towards achieving universal health coverage for all by 2030 provides the EU Institutions with guidance, from the patient’s perspective on achieving universal health coverage in Europe, and is a core reference document linking the 2030 Sustainable Development Agenda to the EU health policy framework .
EPF’s active participation in many significant events and meetings during 2017 where we had the opportunity to make high-profile interventions, enabled us to embed core messages on patient empowerm
EPF is the only EU level umbrella patient organisation that is non-disease-specific, occupying a unique position as the uniting voice of patients from all chronic disease areas and acting as a “bridge” between EU developments and patient communities across the Union. In addition to contributing a critical patient perspective to policies and programmes at EU level, we build awareness and strengthen the capacity of community actors to engage in their own arenas – particularly as regards the involvement of patient organisations in implementation of EU legislation and recommendations at national level.
Our priorities in 2017 continued to ensure that a strong patients’ perspective is integrated into all relevant health-related policies at EU level, as well as supporting the implementation of EU legislation of relevance to patients. Patients living with chronic conditions are “experts by experience” whose perspective on disease and care is unique. Patient empowerment at both individual and collective (policy) level is, in our assessment, a pre-requisite to realise equity in healthcare and advance the concept of patients as “co-producers” of health.
Our specific policy work was clustered in two broad thematic areas – ‘patient empowerment’ and ‘patient access’ – that reflect our strategic vision and mission.
EPF was committed to embedding diversity and inclusiveness in carrying out our Work Programme, especially in respect of our policy work. As a membership organisation, our members play a central role in policy formulation and validation process.
A full member consultation is always undertaken on all new policy areas, ongoing issues where there are substantial new developments, or in any other area where the input of our collective membership is needed. A draft position is prepared by the Secretariat, with input from our policy advisory group or dedicated Working Groups on empowerment and access, as relevant, building on previous positions where they exist. The draft is sent to all EPF members for comments, usually over one month or longer. Comments received are then integrated in a 2nd version which is again sent out for a consultation to finalise the document. On the rare occasion where there is disagreement between members on any specific point, discussions can take place between EPF and the members concerned in order to arrive at the consensus position. The EPF Board has the right to take a final decision on a position.
In 2017 EPF continued to engage in EU health-related policy and strategy at a high level, in cross-cutting advocacy work promoting all our strategic goals. As an illustration, in collaboration with health and consumer NGOs, we engaged with the European Semester process and the role of health therein, taking forward previous collaboration such as the Vilnius Declaration (2013) and its follow-up event under the Latvian Presidency (2015) which resulted in the “Riga Roadmap” for action. Moreover , EPF developed our own position on the country specific recommendations of 2017.
As a further example, in December, EPF organised a European Roundtable conference on the Cross Border Healthcare Directive, with the involvement of patient organisations, national and European policymakers, and several EU countries’ National Contact Points, to review progress and highlight gaps and challenges. The outcomes will feed into our further advocacy vis-à-vis the Member States, Commission and European Parliament on the implementation of the Directive.
Based on input received during the Roundtable, we developed a proposal for the collection of patient feedback that can be used to develop concrete tools to ensure the patient’s experience is captured for future monitoring.
The EPF 2017 Work Programme was the Third Operational Programme implementing the three-year Framework Partnership Agreement between EPF and the Consumers, Health and Food Executive Agency (CHAFEA). This Programme was, in turn, anchored in and contributed to the EPF’s Strategic Plan covering the seven-year period 2014-2020.
The EPF 2017 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.
WP 1 Patient Empowerment
EPF continued to work with its members in the Working Group on patient empowerment, which met twice in 2017 and contributed to a Toolkit to Support Patient Organisations in their advocacy on patient empowerment. Building on the outcomes of the patient empowerment campaign in 2015-16, and in particular the Patient Empowerment Charter and Roadmap, we continued outreach and advocacy activities on patient empowerment embedding key messages in all the areas we are active in.
On Health System Performance Assessment, we commenced a collaboration with the OECD on Healthcare Quality Indicators and in the context of its new PaRIS initiative (launched in January 2017) in which we are a key partner.
Health literacy and information to patients
We continued to work with an informal coalition of stakeholders to promote health literacy as a policy priority, inter alia, by participating in a joint session at EHFG 2017.
Moreover, as a result, via our advocacy work, Council conclusions on digital health of 28/11/2017 mentioned health literacy as a requirement in the design and implementation of digital tools in order to avoid exacerbating health inequalities, and the potential of digital tools as aids to enhancing health literacy.
Information to patients on food and nutrition
In June, EPF co-organised an EU patient groups conference on nutrition, together with the Patients Network for Medical Research and Health (EGAN) and the European Nutrition for Health Alliance (ENHA). In the context of the Optimal Nutritional Care for All (ONCA) campaign, the meeting worked towards a renewed patient agenda on nutrition for 2018 and onwards. Following interest from EPF’s members on this topic and EPF’s previous work, EPF developed a position statement on information to patients on food and nutrition. This position statement, which underwent extensive consultation by the EPF membership, includes an additional briefing aspect which had not been initially envisaged in the 2017 work plan.
We continued our close collaboration with the European Medicines Agency (EMA), disseminating information to patient communities and participating in relevant EMA activities, which ranged from making medicines information truly user-centred and formalising the involvement of young patients, to the first-ever public hearing on medicines safety, as well as dedicated information workshops on antimicrobial resistance and personalised medicine.
EPF continued to engage in the implementation of the EU Clinical Trials Regulation, specifically concerning transparency and patient information. A major milestone was our participation in an event to take forward the implementation of lay summaries of clinical trial results, following the EU guidance adopted in 2017 with EPF’s contribution. Following the event hosted by the European Forum for Good Clinical Practice (EFGCP), EPF will continue to be part of a stakeholder group working on practical issues for the implementation of good quality lay summaries, in 2018 and beyond.
We also issued a policy factsheet explaining in simple and visual terms what clinical trials are, why they matter to patents, what the patient’s priorities are, and what role the EU plays. This document is used by lay people, as well as patient organisations and advocates, to support communication and convey effective messages in meetings with policy makers and other stakeholders.
Digital health, big data and personalised medicine
Following on from EPF’s 2016 position paper on eHealth, we organised a webinar on eHealth for our members in April. The webinar, attended by 8 EPF members particularly active in the field provided a good overview of the EU eHealth policy framework as well as a concrete example of a mobile application led by patients for patients, furthering the knowledge and collaboration between EPF members on this subject.
In 2017, EPF relayed patients’ expectations of digital health care, the imp
Key outcomes of the external evaluation as reported in the final evaluation report delivered by the external evaluator:
“The primary observation, in all interviews and surveys is the high-quality performance of EPF staff. Survey respondents invariably emphasise the quality of the work and the professionalism of EPF. Interviewees, both members and external stakeholders, applaud the know-how and dedication of the EPF staff. Based on his own experiences attending EPF events in this and previous years, the evaluator subscribes to this culture of quality performance within the organisation and among its staff and leadership team.
A second observation is that EPF addresses topics that matter for patients. This year’s member survey indicated that members are not only very satisfied with the performance of EPF, but also recognise that EPF is pursuing objectives and activities that are important for its members and that it is addressing policy issues that are also on the agenda of its members.
A third observation concerns the very similar opinions that external stakeholders hold of EPF: they emphasise that EPF’s unique selling proposition is its representativeness and its uniqueness in bringing the patient perspective to the table. Moreover, they see EPF as constructive, competent, reliable partners with a good network, with in-depth knowledge of a broad range of issues, and with a growing influence on the health debate at European level.
Finally, the Roadmap [on access] constitutes an excellent example of the above-mentioned features of EPF: it demonstrates the expertise, professionalism and hard work of the EPF staff, as well as its potential to network and activate relevant ‘people in high places’.”
When it comes to what could be further improved in the coming years, the external evaluator reports that:
“The work undertaken by EPF is much appreciated by the participants, members and external stakeholders. The evaluator, moreover, is impressed by the quality and consistency of both deliverables and events. Moreover, the positive appreciation on each of the assessment tasks is to a large extent due to the dedication of individual staff at the EPF secretariat.
It therefore comes to no surprise that members and external stakeholders, when asked about suggestions for change or indications on how EPF might do (even) better in future, often indicated that EPF is already doing a good job and should not necessarily be doing more or different things. The interviewees who did come up with suggestions indicated that the quality of the work and the relevance of the organisation could be further enhanced by:
• paying specific attention to the interests and concerns of individual members;
• involving members in the development of European projects;
• developing (good) practice examples that illustrate the variety of circumstances in which its members and their constituencies are living;
• demonstrating that EPF is and remains sufficiently distant from the pharma industry. “
Evaluation against Key Performance Indicators
In order to avoid duplication and repetition, as recommended in the guidance, in this part we would, therefore, like to simply summarise the extent to which the various KPIs (process, outputs, and outcomes).
OBJECTIVE 1 - To promote the development and implementation of policies, strategies, and services that foster the empowerment of patients and patient organisations.
• The EPF Working Group on Patient Empowerment worked effectively and met twice in 2017. The members of the groups were actively involved in the development of the toolkit on Patient Empowerment.
• The task force on key competencies in patient safety also met twice with respectively 14 and 15 participants, and contributed to the Proposal for core competencies as planned.
• We implemented our policy and advocacy work on empowerment and patient-centred care through different means: on clinical trials, we prod
D5.3 Factsheets on clinical trials, on the EPF Access Campaign and on the Roadmap to achieve Universal Health Coverage
D5.4 Blog Monthly updates with focus on members’ stories and guest editorials
D5.5 Press Releases Publication of 12 press releases on ad-hoc policy or EPF-related
D5.6 Video on young patients view on discrimination
D5.7 Newsletter- 11 publications of EPF newsletter
D5.8 Annual Report -Summary of achievements in past year
D5.9 Video on the Access Campaign
The dissemination activities follow the long-term objectives of communicating to inform, to engage, and persuade. EPF’s communication strategy aims at delivering straight-forward, meaningful, and reliable material to inform the patient community, policy-makers, and stakeholders directly and indirectly involved in health, and promote the engagement of the EU patient community.
In 2017, we issued in 11 electronic newsletters to 3444 active subscribers. These monthly mailings showcase EPF’s most recent activities and positions, and offer a platform for our members’ initiatives. In total 105 articles, including 29 Blog posts were disseminated via these newsletters, both through direct email and via hyperlinks on our website.
We published 47 issues of our “Weekly Insiders’” mailing, a short newsletter-style message sent on every Tuesday to EPF members. The objective is to ensure EPF members keep up with the latest news from the EU on what really matters for patients: upcoming events, policy developments, EPF consultations, funding opportunities, and other members’ activities. Throughout 2017, the Weekly Insiders was sent to 245 subscribers from our 74 members each week.
Our flagship publication, the Annual Report was produced by April 2017 and distributed to key external and internal audiences. The report has been produced in 300 hard copies and disseminated online.
Our website continued to play its role as major external window and main showcase of our activities and events to the external audience. The contents and the general layout have been improved and updated in line with the modernisation of our visual identity. Keeping in mind a growing number of our visitors use the mobile version of the website, the content production considered responsive design and social media friendliness to enhance the delivery of information on mobile supports.
Videos play an important role in our communications. In 2017 EPF produced and published two videos, one on the EPF’s Youth Group campaign on discrimination, and another developed in the framework on the EPF Access campaign. The videos have been disseminated through our newsletters and social media and are available on our YouTube channel.
Our external evaluation report confirms that EPF is seen as patient-led and patient-centred, representing the whole spectrum of diseases, and as a very professional organisation which offers the patient perspective based on high-quality evidence: good expertise on policy issues making a credible plea for its target group. Our presence and visibility in Brussels is strong. Our strong profile at EU level makes a difference to our members, supporting and lending credibility to their own advocacy efforts at national level.