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European Patients' Forum - Specific Grant Agreement 2016 [EPF-SGA-2016] [709743] - Operating Grant
Project abstract

EPF’s 2016 Work programme is a continuation of the 2015 work programme and has two overarching objectives derived from the strategic goals in our 2014 – 2020 strategic plan:
1. Strengthening the patient perspective and impact in EU health-related policy, programmes and decision-making through evidence-based, results-oriented patient advocacy;
2. Reinforcing the capacity of patients and patient organisations to contribute effectively to better health and social care for all patients in the EU and enhancing their accountability and mutual solidarity;
The WP will contribute significantly to the objectives of the Third Health Programme, mainly objective 3 “supporting public health capacity building and contributing to innovative, efficient and sustainable health systems” and 4” facilitating access to better and safer healthcare”. It contributes specifically to the implementation of key EU legislation on cross-border healthcare, patient safety and quality of care with a major event in 2016, clinical trials, medical devices, data protection, personalised medicines as well as eHealth and HTA. Patient access will be a major focus of our activities with work on health literacy and discrimination. We will achieve our objectives through targeted policy, communication, membership engagement, capacity building and partnership activities resulting in deliverables set by our two thematic areas of patient empowerment and equitable access to quality care. They are also in line with EPF’s strategic plan and stringent governance/consultation procedures. We will continue to place emphasis on EPF’s Youth Group, the needs of patients from vulnerable groups and non-discrimination on the grounds of health. We will collaborate closely with health stakeholder allies in the public health arena and mutually support relevant dossiers. The WP”s processes, outputs and impact will be 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

EPF’s work programme 2016 addressed the continuum of healthcare with focus on patient-centred chronic disease management, patient empowerment and patient access. EPF's work contributed 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 work programme contributed concretely to the strategic goals expressed in our Strategic Plan 2014-2020 (

A more proactive role by empowered patients in their health and in health policy is key to ensuring the high quality of our future health systems and addressing the challenges of chronic diseases, constraints on health budgets and rapid developments in technology, whilst advancing the concept of patients as “co-producers” of health (The Health Foundation 2013, Mulley et al., 2012; Reflection Process on Chronic Diseases, Final Report, 8 October 2013). The Third Health Programme recognises this and 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 empowerment was also identified as a key theme in the reflection process on chronic diseases and its follow-up actions, the European mapping study “EMPATHIE” and the Joint Action CHRODIS, in which EPF participates. In 2016 patient empowerment continued to be at the heart of our work, through our campaign on patient empowerment ‘Patients prescribe E5 for sustainable health systems’ and also specific actions on patients’ rights, health literacy, patient-centred care, patient safety, and clinical trials.

Health systems performance is part of Commissioner Andriukaitis’ mandate and stated priorities; quality of care and integrated care were identified by member states as priority topics in 2015-16. (EC PSQC EG, 8 June 2015). Patient-centeredness is recognised as a core component of quality care (EXPH, 2014). Patient-centred care models have been shown to be cost-effective and improve outcomes: when patients are genuinely involved in healthcare decisions and their preferences are listened to and acted on, the result is better health, more engaged patients and lower costs (Mulley et al, 2012; Arterburn et al 2012; Veroff et al, 2013).

EPF contributed to these policy interactions inter alia with our report on European patients’ perception of “quality” in care and/or participation in the ‘new’ EC Expert Group on safety and quality.
The Commissioner is also committed to supporting innovation and efficiency in health systems, particularly eHealth, in order to provide sustainable and equitable healthcare; safeguarding universal health coverage, quality and safety; and tackling health inequalities. These themes were integral to our strategic plan and EPF’s work programme 2016 addressed all of these areas through specific and outcome-oriented activities, presenting uniquely the perspective of Europe’s patients.
The economic climate continues to challenge the equity and sustainability of EU health systems. Whilst highlighting the fundamental values of universality, equity and solidarity (Council conclusions 2006), EPF’s 2016 work programme continued our fight against health inequalities, building on the Commission’s SWD “Investing in Health” (February 2013). Our focus was on access to healthcare and the impact of austerity measures from the patients’ perspective, as well as reaching out to potentially vulnerable patie

Methods and means

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 2016 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 2016 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. We engaged as appropriate with the future EU strategy for the pharmaceutical sector, outlined in the Commission’s staff working document “Pharmaceutical industry: a strategic sector for the European economy” (2014). 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.

In 2016 we held a regional advocacy seminar during the Dutch Presidency to strengthen our links with the Dutch patient community, together with neighbouring countries’ patients’ organisations. During 2016 we took forward our work on patient safety by organising a conference exploring the patient’s role in patient safety during the second half of 2016. These actions will hopefully lead to real and lasting buy-in by member states to accelerate their considerable efforts in this area to ensure patient involvement is part of the systemic and cultural change needed in the sphere of patient safety.

Work performed during the reporting period

WP 1 Patient Empowerment

Activities falling under the Patient Empowerment cluster have been designed and implemented in close cooperation with the EPF Working Group on Patient Empowerment (Empowerment WG). The WG group on patient empowerment met twice during 2016, in June and October.
The group’s work plan this year focused on discussions around giving input into the EPF paper on patients’ rights and responsibilities, and an information session on healthcare quality indicators for patient-centeredness in order to build capacity in our membership to engage in Health Systems Performance Assessment (HSPA) and healthcare quality debates. On the latter, we invited an OECD expert as external contributor. Preparatory work was also done on the patient empowerment toolkit for 2017. A patient safety capacity-building session was held adjacent to the second meeting of the working group in order to enable participants to attend easily; the aim of the session was to prepare participants for the conference on patient safety and to have a preliminary discussion on EPF priorities in the area of patient safety for the next years. In this session, a particular focus was on antimicrobial resistance and healthcare-associated infections, with the contribution of an external speaker from the ECDC.
On clinical trials, EPF continued to engage with the implementation of the new EU regulation. We published our position paper on informed consent – originally planned for end of 2015, but requiring additional member consultation – in May and we also responded to the European Commission’s public consultation on the EU draft guideline on patient-friendly, unbiased lay summary.

The review of “core quality criteria” on information for patients took place this year, as it had been postponed from 2015. This took the form of a stakeholder survey.
On health literacy, we continued our engagement with the informal Coalition: this year we updated the consensus paper adopted in 2013, and continued to embed the concept of health literacy as a key aspect in all our work on patient empowerment and access. Closely linked to health literacy, we continue to focus on self-care for minor issues, and self-management of chronic conditions, both critical life skills and aspects of empowerment, through our participation in two relevant CHAFEA-funded tender studies on the topic (PISCE and PRO-STEP). The findings from these studies will inform our advocacy work around self-care from 2018 onwards.

For the second time, EPF worked with the European Commission (DG Grow) to organise a session on biosimilar medicines, focusing on the information needs of patients, in June 2016. In addition, to the work planned under the Operating Grant, we also made a substantial contribution to a comprehensive re-write of the DG GROW information document intended for patients and lay persons.

EPF continued as a strong partner with the European Medicines Agency (EMA), through our representation on the Working Party with Patients and Consumers (PCWP) and the Pharmacovigilance Working Party (PRAC). In March, we partnered with the EMA on the Agency’s first-ever event on the theme of health literacy, and how it impacts risk communication. We continue to disseminate information from the EMA to patient communities, contribute to the review of documents, user-test EMA services (such as new web tools) and act as a liaison between the EMA and disease-specific patient representatives where needed for ad hoc activities. We also participated in several EMA events e.g. on pharmacovigilance, information to the public on medicines, adaptive pathways, and the use of social media.
Following the publication of new EU Regulation on personal data protection, EPF developed a guide for patient organisations to explain key aspects of interest to patients in the new regulation. We continued to engage with the topic of personalised medicine through our participation in the European Personalised Medicine

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 2016 Work Programme.

A consensus statement on patients’ rights and responsibilities (D 1.1) was developed, with input of the EPF working group. In view of the complexity of the discussion, the working group decided that this statement should be circulated only to EPF members, as they wished for further discussions with the patient community to take place before taking a view on the creation of any new EU-level documents on patients’ rights. The EPF statement lays out in a clear way the existing instruments and policy backdrop to enable reflective and informed further work and debate involving the entire membership and other relevant partners.

Minutes of the meetings of the working group on empowerment (D 1.3) were prepared as planned. The group benefited from education sessions by expert speakers on the topics of healthcare indicators and AMR; and in turn contributed their patients’ views for the education of the experts; this resulted in a closer relationship with the institutions concerned. They also gave input and guidance for the development of the preliminary statement on patients’ rights and planned their work for 2017.
The review of the “core quality criteria” on information to patients (originally D2 of the FPA planned for 2015) was finalised this year as explained in our 2015 report. This was done via a stakeholder online survey. These criteria were developed in 2008 by the EU High-Level Pharmaceutical Forum, but the policy and technological environment on health-related information has undergone great changes since then. By surveying stakeholders’ awareness and perceptions of the criteria, we were able to confirm their continuing relevance as principles for information “per se”, while more attention needs to be placed on the question of information channels.

Our work on clinical trials resulted in the publication of the patients’ position on informed consent, whose recommendations will inform our future advocacy; our previous contribution to the draft EU guideline on lay summaries resulted in the publication of the draft for public consultation to which EPF also submitted a further response.

On health literacy, the 2013 consensus paper of the informal coalition was updated this year. Based on the prominence of health literacy in our advocacy work, EPF was invited to collaborate with the European medicines agency on a meeting dedicated to this topic, in March.

On biosimilars, our collaboration with DG Grow resulted in a successful session of the annual stakeholder forum on biosimilar medicines, focusing on the information needs of patients in June, and a re-written information document intended for lay patients.
Our engagement on various platforms to disseminate and follow-up on key position papers was again fruitful in 2016 as we were able to engage new audiences of professionals and academics as invited speakers at major conferences: to give some examples, the presentation of our 2015 paper on adherence/concordance at ESPACOMP 2016; the patient perspective on empowerment and integration of care at ICIC 2016; and our perspective on patient-centred healthcare at the WHO European office meeting on person-centred health services.

The work of the working group on access resulted in the publication of a report on the survey of patients’ access to healthcare. The survey builds on EPF’s 2015 position paper on access with the aim of gaining more knowledge and further developing our evidence-base on health inequalities and access barriers as experienced by patients. This evidence is particularly valuable for EPF’s future activities in this area, notably the EPF campaign on “universal health coverage for all” to be carried out as part of our 2017 work programme.
In 2016, EPF put increased focus on working with groups that are vulnerable to health inequalities and discrimina

Achieved outcomes compared to the expected outcomes

Our mission is to put patients at the centre of policies and programmes that affect them directly or indirectly, and to drive changes that empower them to be equal citizens in the EU.
As in previous years, our 2016 Work Programme was designed to help us advance our patient centred agenda, while contributing a patient perspective towards the strategic objectives of the EU Third Health Programme, especially 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).
We are confident that our 2016 Work Programme has made a significant contribution to that by ensuring that a strong patients’ perspective is integrated into all relevant health-related policies at EU level, highlighting the priorities of the patient community and there are legitimate expectations from decision-makers, as well as supporting the implementation of key EU legislation of relevance to patients, e.g. in the area of cross-border healthcare and clinical trials.

Our work on cross-border healthcare has resulted in raised awareness among patients’ representatives about the rights granted by the Directive, as well as the existing gaps and uncertainties in implementation at national level. The rich patient feedback gathered since 2013 through our regional events has been captured in detailed reports and a position paper, which provides an important resource for decision-makers at European and national level as well as actors like National Contact Points and healthcare providers. Our work was explicitly referred to in the Commission’s implementation report published in the autumn of 2015, and some of the recommendations, e.g. on increasing patient involvement, harmonising information templates, and developing operational criteria for NCPs, have been taken forward. We have continued to push for patients’ needs to be taken as priority also during 2016 and have presented our recommendations at several events.

Our work on patient safety during 2016 has been particularly innovative and provided clear added value: the EPF autumn conference explicitly drew a link between the topics of patient empowerment and patient safety, and for the first time started an exploration of issues that are critical for patients but have not been addressed in EU health policy (or even national health policy, in many cases): how can patients and families help improve safety, what are their roles within and expectations from the health system, care organisations, and what changes are needed to realise a system where patients and families are not only at the centre but genuinely part of the care team. The outcomes of our event were very rich and will inform our further work priorities in the next year and beyond, as well as the report being immediately available.

Measuring the impact of advocacy work remains a challenge. Whilst we believe that the three-year framework partnership agreement was a positive innovation that enables us to establish more sustainable, operational priorities and objectives in the long term, the evaluation requirements remained anchored in each year’s work programme. As a result, the span of activities is too short to draw relevant and meaningful conclusions.

More flexibility in delivery of the policy work given the often shifting nature of the policy-making environment and emerging new issues, com

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


1.EPF position papers and reports:

All our 2016 position papers, briefings, or statements can be found at the same address:
-Equal treatment of patients in education and in the workplace
-EPF position paper on defining and measuring access from the patients’ perspective
-EPF position paper on clinical trials lay summary results
-EPF position paper on informed consent
-EPF briefing paper on Patient Safety
-EPF Guide on Data Protection
-EPF Statement on the Pricing and Reimbursement of Innovative Medicines

EPF Communication Material:

-Newsletters: (further information below)
-Annual report:
-Press releases:

Our positions and reports have been mentioned in different media at national and EU level for a total of 21 articles/quotes/mentions in digital publications and 6 printed media. Through these press clippings, EPF’s positions and materials have reached a varied audience, from specialised magazines to broad and generalist papers. Our material has also been shared extensibly on social media, with high figures or reach/impressions and pesented and/or disseminated at events by EPF or its members into national channels, and to follow up when EPF materials have indeed been distributed to Member States.

We published 46 editions of our “Weekly Insiders’” mailing, a communication sent every Tuesday to our members only. The objective is to ensure EPF members keep up with the latest news from Europe on what really matters for patients: upcoming events, policy developments, EPF consultations, funding opportunities. The opening rate was very good, with more than 65% of member organisations opening the mailing each week.
On the communication side, overall the feedback we received was very positive. The updated visual identity of EPF, with more animated and flat-design illustration-based publications seem to please our network and audience. We receive direct feedback from members, but also external feedback via our social media channels and in physical meetings. Reactions and feedback from EU institutions and their officials take predominantly place via mailing or one-to-one meetings.
Were dissemination activities carried out as planned?

Target audience:

-EPF’s 67 members are the main target audience of EPF internal communication strategy. We contact them mainly via direct mailing, individual emails or face-to-face meetings.
-Patient organisations and the patient community: via our members and wider network, EPF exchanges with national disease-specific patient groups. Their support is of great value as they cascade our messages to their local partners and bridge the national and European level with respective players.
-Members of the European Parliament (MEPs): selected high profile MEPs across the political parties, including ENVI, IMCO, ITRE, BUDG, LIBE committees and others on an ad hoc basis. Contact methods mainly include emails, telephone calls and physical meetings.
-European Commission, the cabinets and DGs: DG Santé, DG CNECT, DG RESEARCH, DG ECFIN, DG EMPL, plus ad hoc DGs as health in all policies is one of our ultimate objectives. Contact methods mainly include emails, telephone calls and physical meetings.
-Council and Health Attachés: high profile champions that will speak out for health and a patient’s perspective. Contact methods mainly include emails, telephone calls and physical meetings, when possible.
-Health stakeholders: EPF works closely with key partners of other public health related organisations such as other NGOs, industry, academia, research organisations, etc. Contact methods mainly include emails, telephone calls and one-to-one meetings.