Table Of Content. EUROPEAN PATIENTS' FORUM - OPERATING GRANT Summary... 4 Work Package... 13

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1 Table Of Content EUROPEAN PATIENTS' FORUM - OPERATING GRANT Summary... 4 Work Package PATIENT EMPOWERMENT PATIENT ACCESS SUSTAINABLE PATIENT ORGANISATIONS COORDINATION-EVALUATION DISSEMINATION Coordinator, Leader contact and partners Outputs EPF newsletter special articles, blogs on patient safety Dissemination Means: EPF monthly newsletter, website, blog, press releases, blog posts Consensus definition patient empowerment Position quality criteria for information to patients Consultation response to EMA transparency policy Position paper on ehealth Toolkit for sustainable Youth Groups Conference report Position on information/informed consent provisions of the Clinical Trials Regulation Position statement on defining and measuring access Patients checklist and recommendations for National Contact Points EPF position on implementation of Directive 24/ NCP Conference report Final questionnaire on quality of care Position paper discrimination in education and the workplace Report on the Spring Youth Group Meeting Report on the Annual Youth Group Meeting Youth Group leaflet EPF membership Flowchart EPF membership guide Improved members section on EPF website Feasibility study on the creation of a Social Platform EPF Social Platform Weekly Insiders Mailing Reports from the Weekly (virtual) Coffees with EPF Report on analysis of the situation in white zones Report of the Regional Advocacy Seminar (RAS) Concept for lighter training pilot Dissemination Means: Video, promotional items Dissemination means: Annual Report Dissemination Means: Factsheets and leaflets Briefing notes of bi-weekly team and Thematic meetings Minutes of the meeting of the Policy Advisory Group (PAG) Report of mini workshop on CBHC Page 1/25

2 Minutes of the meetings of the working group on Access Minutes of the meetings of the working group on Empowerment Minutes of General Annual (AGM) meeting Minutes of Board meetings and elected officers meetings Page 2/25

3 EUROPEAN PATIENTS' FORUM - OPERATING GRANT JA GPSD [705038] START DATE: 01/01/2015 END DATE: 31/12/2015 DURATION: 12 month(s) CURRENT STATUS: Finalised PROGRAMME TITLE: 3rd Health Programme ( ) PROGRAMME PRIORITY: - CALL: Specific Grant Agreements for 2015 under the Framework Partnership Agreement for Operating Grants TOPIC: Financial contribution to the functioning of non-governmental body (Specific Grant Agreement 2015) EC CONTRIBUTION: EUR KEYWORDS: Access, Empowerment, Health Inequalities, Health Literacy, Inclusive, Involvement, Non- Discrimination Due To Health Status, Patient Rights, Self- Management, Sustainable Patient Organisations, Sustainable Patient Organisations Page 3/25

4 SUMMARY Project abstract EPF s Programme has two overarching objectives derived from the strategic goals defined in our 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 nondiscrimination on the grounds of health. The WP will reflect the healthrelated 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 ongoing 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 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, Page 4/25

5 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 Page 5/25

6 by subsidiary under Belgian law. Governance: 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: ocuments/who%20we%20are/coredocuments/epf-constitution-2010.pdf 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: ents/membership/membershipapplication/how%20to%20join.pdf 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 Page 6/25

7 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 An external accounting fi Work performed during the reportingperiod 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 Page 7/25

8 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 policymakers, 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 Page 8/25

9 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 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 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 coorganised 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 Page 9/25

10 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 Page 10/25

11 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 cochairs 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 activitiescarried 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 twofold 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 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 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 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 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 Our presence on social media helped us to ensure enhanced coverage of Page 11/25

12 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. Page 12/25

13 Work package Work Package 1: PATIENT EMPOWERMENT Start month: 1 End month: 12 Work Package Leader: The work package will focus on a number of policies and strategies that empower patients to be involved in decision-making and management of their conditions, whilst raising awareness of their rights and responsibilities. This includes access to high-quality information that supports informed decision-making and patientcentred innovation. Issues covered include e.g. patient empowerment and patientcentred healthcare, health literacy and information to patients, clinical trials, technology and personalised medicine Work Package 2: PATIENT ACCESS Start month: 1 End month: 12 Work Package Leader: The main driver in this area will be EPF s thematic working group, the role of which is to define access from the patients perspective, contribute to specific policy and projects work and build evidence-base on health inequalities. The following issues will be addressed under this work package: cross-border healthcare, health technology assessment, patient safety and quality of care. Work Package 3: SUSTAINABLE PATIENT ORGANISATIONS Start month: 1 End month: 12 Work Package Leader: The work package consists of a number of activities designed to support EPF s Youth Group through capacity development, work on transition to adult care and discrimination and cross-cutting actions. Furthermore work will be undertaken to reinforce EOF s membership, bring clarity to the membership structure and added value, stimulate a vibrant network, membership development and growth and strong patient organisations. Page 13/25

14 Work Package 4: COORDINATION-EVALUATION Start month: 1 End month: 12 Work Package Leader: The following statutory groups will meet regularly: the EPF board, the Policy Advisory Group, which harnesses input and policy expertise from our members and exchanges ideas on policy issues both in terms of strategy and of content. There will also be the statutory AGM. In addition bi-weekly team meetings and thematic meetings are planned. Work Package 5: DISSEMINATION Start month: 1 End month: 12 Work Package Leader: EPF has a well-established set of communication channels and tools to serve the core audiences Page 14/25

15 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR FORUM DES PATIENTS EUROPEENS ASBL EUROPEAN PATIENTS FORUM () Rue due Commerce Bruxelles Belgium WEBSITE: Project leader contact Name: ATZORI Walter Phone: PARTNERS No partners related to the current project Page 15/25

16 OUTPUTS EPF newsletter special articles, blogs on patient safety Dissemination of information and advocacy tools on patient safety, including HAIs, AMR, patients rights, complaints and redress, to raise awareness and support the patient communities capacity to advocate for patient safety in member states. Dissemination Means: EPF monthly newsletter, website, blog, press releases, blog posts The newsletter reaches a large number of stakeholders to provide them with latest information about our activities within EU policy developments and projects, as well as reports of events that we have attended or organised. Our website remains a vital element of our communication s strategy and will be constantly updated. Press Releases: We will issue press releases to share our key policy achievements in Blog: Regular posts to add more depth to our work with contextual information and new angles to a specific theme. Consensus definition patient empowerment Expected on: 01/06/2015 Statement defining patient empowerment and related concepts (e.g. patient involvement, shared decision-making health literacy) developed with the EPF working group on patient empowerment. Position quality criteria for information to Page 16/25

17 patients Expected on: 01/10/2015 Review of core quality criteria for information to patients developed by the high level pharmaceutical forum to ensure they still correspond to patients needs. Consultation response to EMA transparency policy Expected on: 01/04/2015 Response to consultation on sharing of patient-level data based on previous work in clinical trials, data protection and members input. Position paper on ehealth Expected on: 01/01/2016 An evidence-based position paper on ehealth focused on what is needed from the patients perspective to harness the potential of ehealth including mhealth, especially in the light of the Green Paper on mhealth and the actions the European Commission will take further to the 2014 stakeholder consultation Toolkit for sustainable Youth Groups Expected on: 01/12/2015 Manual with useful tools for YG members on governance, membership, communication Conference report Page 17/25

18 Expected on: 01/07/2015 European conference bringing together patient leaders and National Contact Points from EU member states, to address the European Commission draft report to the council and steps forward to support meaningful patient involvement with the NCPs Position on information/informed consent provisions of the Clinical Trials Regulation Position paper on the implementation of the information/consent provisions of the Clinical Trials Regulation. Position statement on defining and measuring access Statement defining access to health and social care from the patients perspective, and provide recommendations towards establishing health inequalities and access indicators that better capture the experience of patients, developed with EPF working group on Access. Patients checklist and recommendations for National Contact Points Based on input of workshops on cross border healthcare with patient organisations we will prepare a patients checklist and recommendations for the functioning of National Contact Points. Page 18/25

19 EPF position on implementation of Directive 24/2011 Recommendations for the European Commission draft report to the Council on the patients experience with implementation of the directive on cross-border healthcare. NCP Conference report Report of conference EPF patient/ncp conference on cross-border healthcare Final questionnaire on quality of care Launch of pilot-tested questionnaire for an EPF member study on quality of healthcare from the patient s perspective. Position paper discrimination in education and the workplace A position paper to raise awareness of how patients are discriminated in various areas of life and provide recommendations for decision makers to improve their situation. Report on the Spring Youth Group Meeting 2015 Page 19/25

20 Outcomes of the meeting with updates on topics such as membership, governance, planning of activities till the end of the year Report on the Annual Youth Group Meeting 2015 Outcomes of the meeting on topics such as membership, governance, strategic planning of activities for the following year Youth Group leaflet Short description of the Youth Group EPF membership Flowchart The membership flowchart will present the outcomes of the membership structure s review, outlining the different membership categories and the subscription process. EPF membership guide The objective of the membership guide is to help members maximise the benefit of their membership in EPF. It will include an overview of the support Page 20/25

21 we offer and inform potential new members about EPF and the advantages of joining us. Improved members section on EPF website Following the upgrade of the website, the members section will be reorganised in a clearer and friendlier way, integrating the EPF membership flowchart and the EPF membership guide, and offering more visibility for our members. Feasibility study on the creation of a Social Platform A survey will be conducted among EPF members and members of the staff to measure their interest in the development of an online forum and list their needs and expectations. These needs will be translated into a list of features and technical requirements that should help us to choose the most adequate tool and provider. The feasibility study should also include a simple budget plan linked to the development of the online forum. EPF Social Platform The EPF Social Platform will be an online forum for EPF members to exchange experiences and information. The production of this deliverable is subject to the outcomes of the feasibility study to be conducted in the first semester of Weekly Insiders Mailing Page 21/25

22 The Weekly Insiders is a members-only report which highlights the main EPF activities, policy consultations, events and news relevant to the patient community on a weekly basis Reports from the Weekly (virtual) Coffees with EPF This initiative provides a weekly opportunity for members and the Secretariat to exchange informally about their current activities and priorities, virtually or in person. Report on analysis of the situation in white zones EPF will conduct an analysis of the situation in white zones (diseases and geographical areas where EPF is not yet represented). Report of the Regional Advocacy Seminar (RAS) In line with EPF s commitment to empowerment, this seminar will look at strengthening patients organisations advocacy capacity to become a more empowered actor in national and European health policy arena. The RAS will take place in Scandinavia. Concept for lighter training pilot Page 22/25

23 EPF will explore new formats to provide support ant trainings on issues of interest to its members. One of these new format will be run as a pilot. Dissemination Means: Video, promotional items targeted promotional items to disseminate messages and results related to the work programme. Dissemination means: Annual Report The 2014 Annual Report will describe EPF activities and achievements of 2014 and will be distributed at health events and in bilateral meetings with key policy-makers of the European Commission and the European Parliament. Dissemination Means: Factsheets and leaflets The factsheet leaflets will provide a concise and simple summary of one theme following the policy agenda to constitute the EPF advocacy directory. Briefing notes of bi-weekly team and Thematic meetings Page 23/25

24 Bi-weekly the staff will be held a meeting to coordinate activities. Briefing notes will be produced for each meeting. Minutes of the meeting of the Policy Advisory Group (PAG) The Policy Advisory Group will advise on EPF s policy input from both a strategic and content perspective, in order to support EPF s broader membership, Board and the Secretariat in this work. The group will also serve as a platform of information exchange on current work between EPF member organisations. Twice a year the PAG will meet. Minutes of the meetings will be produced and disseminate to the group. Report of mini workshop on CBHC 6 mini workshops on the Cross Border Directive in Europe. Reports will produces for each workshop. Minutes of the meetings of the working group on Access The working group will inform EPF s policy development on access, from both a strategic and content perspective, in order to support EPF s broader membership, Board and the Secretariat in this work. The group will also take a lead on specific activities as defined by its members in the work plan. The working group will meet physically twice a year in Brussels. In addition, regular webinars and/or teleconferences will be organised. Minutes of the meetings will be produced Page 24/25

25 Powered by TCPDF ( Minutes of the meetings of the working group on Empowerment. The working group will inform EPF s policy development on empowerment from both a strategic and content perspective, in order to support The working group will meet physically twice a year in Brussels. In addition, regular webinars and/or teleconferences will be organised. The group will communicate mainly by . Minutes of the meetings will be produced Minutes of General Annual (AGM) meeting The AGM is the higher level governance body. The EPF Members meet once a year. The decisions and discussions are reported in the minutes Minutes of Board meetings and elected officers meetings Discussions and resolutions' minutes of the board and elected officers' meetings. Page 25/25