A glimpse of our 2012 Annual Report
2012 was a new milestone for EPF as we initiated a process to develop a new Strategic Plan document. It will run from 2014 to 2020 in parallel with the next EU programming period. This will be a critically important period for patients in Europe and EPF will do its best to engage effectively and influence EU developments impacting on their lives.
The EPF Capacity Building Programme for patient organisations kicked off in 2012. 30 patient organisations from Bulgaria, Hungary, and Romania and eight pan-European disease-specific patient organisations take part in this pilot programme to strengthen their organisational and advocacy capacity. The idea is to ultimately – by 2014 - enable them to be more effective in achieving their objectives and aspirations, feeding their experiences and expertise into the work of EPF and using the outcomes of this collective work in a national, and/ or disease specific context.
Our Regional Advocacy Seminar held in October was an unreserved success. Patients’ organisations representing 15 diseases came from four Mediterranean countries to learn how to diversify their funding to maintain their capacity and effectiveness to advocate for their rights.
We proudly welcomed three new provisional members - Europa Colon, European Network of Fibromyalgia Associations (ENFA) and World federation of Incontinent Patients (WFIP) as well as one associate member, the Bulgarian Association for Patients’ Defence (BAPD).
We continued to forge strong alliances with other European health organisations and voice patients’ interests through representation work at more than 50 EU events on health policy issues.
Consolidating our policy impact
During 2012, we promoted equitable access to healthcare for all patients across Europe in three major priority areas. These included health inequalities, access to medicines and the revision of the EU Transparency Directive.
We also added significant value to patient empowerment through several activities. These comprised our work on information to patients and health literacy, the reflection process on on chronic disease and also within our different projects..
Health innovation and research have been placed at the heart of our priorities. We adopted strong positions on personalised medicines, data protection and clinical trials as well as supporting the Innovation Partnership on Active and Healthy Ageing.
We contributed with a patient perspective to pharmaceutical policies and provided support to the European Medicines Agency work on medicine regulation and within the Platform on Ethics and Transparency.
Safe and high quality healthcare across the EU was another main policy thrust in 2012. This revolved around three main priorities: collaboration with the World Health Organization, our input into the Patient Safety and Quality of Care Working Group and our positioning on medical devices.
Finally we followed up and monitored the transposition and implementation of key EU Directives across Europe. We offered resources to our members and patients organisations at large (Toolkits on pharmacovigilance, cross-border healthcare and falsified medicines). This enabled them understand implications of such legislation at national level as well as how to get meaningfully and actively involved.
Feeding project’s and patients’ evidence into policy
In 2012, we were also able to translate evidence from our projects and initiatives into our policy work. We closed the ‘Chain of Trust’ project on building trust and confidence between telehealth users with a final report including the main findings and recommendations. The RENEWING HEALTH project on large-scale real-life test beds on innovative telemedicine entered its third phase while the SUSTAINS project on patient access to their Electronic Health Records kicked off. All of these projects contributed to build on the preliminary outcomes to outline our first position statement on eHealth.
A position on Health technology Assessment (HTA) has also been published thanks to the findings emerging from our HTA initiative. We keep a close eye in this area as Advisory Board Member of the AdHopHTA project which started in 2012. The aim is to address the problem of poor use and awareness of hospital based HTA initiatives.
Patient safety continued to be a main concern for EPF in 2012. We launched a survey in a revised format to focus on the awareness and key concerns of patients’ organisations. With it outcomes, EPF is confident to be able to complement the results of the European Commission consultation on patient safety.
2012 marked the start of the European Patient Academy of Therapeutic Innovation (EUPATI). This innovative patient-led academy kicked off in high gear to prepare the ground for educational material, training courses and a public Internet library to educate patient representatives and the lay public about all processes involved in medicines development.
Evaluation and communication
EPF has raised the bar on communications in 2012. We launched into the social media sphere to connect with the patient community, to express the dynamics of our policy, project and events work as well as to promote unity across the EU patients’ movement. This launch appeared together with a series of communication tool updates emerging from our communication strategy. All of these efforts aim to make sure we communicate what we do the most effectively with our diverse audiences. We also engaged in a comprehensive internal evaluation strategy.