I have been President of EPF for the last 7 years and am immensely proud of the journey we have travelled together over this time. As we start to plan for another crucially important 7 years, the new EU programming period, and our 10th Anniversary, in Ireland next year, it is a good moment to reflect on EPF and my hopes and aspirations for the future.
My work with EPF goes hand-in-hand with my responsibilities as Chairman of AGRENSKA, a center in Gothenburg in Sweden providing services and support to children diagnosed with rare diseases and their families. Transcending these two very different worlds gives me a ‘reality check’, that all we do in the Brussels ‘bubble’ has a real impact for patients and their families in every part of Europe. This is critical and also why we need the strongest possible presence at both EU and member state level – to complete that ‘policy loop’ and generate positive change where it matters.
I became President of EPF because I want to make a difference in the way that society functions, our values base and the way that patients see themselves and others see us…to promote a holistic approach based on participation, fairness and equity, not paternalism and power-relations. Equity is integral to EPF’s vision – high quality, patient-centred equitable healthcare for all patients across the European Union. And if we can harness the solidarity and the unity of the patients’ movement and work with others as equal stakeholders, I believe that EPF can really contribute towards a better future for Europe’s patients. A fundamental rethink is needed regarding the way that systems work for patients and their families – we can no longer play around the edges. We need models where patients really are at the center of health and social provision, where they can play a key role through empowerment and health literacy.
Whilst understanding that ‘one size does not fit all’ and patients have different needs and challenges at different stages of their illness, if empowerment is genuinely the premise, the starting point, then this approach raises the bar in terms of quality, safety and sustainability – leading to significant savings and better use of resources, as patients will be using their expertise and experience and contributing to solutions that really work – be that more rational use of medicines and services, more concordance, more confidence in technological solutions, more trust in electronic health records etc. And as we all know, a world that is good for patients is a world that is good for everyone.
EPF is now recognised as a key interlocutor with the EU Institutions regarding cross cutting patients’ rights issues. We will use this hard-earned trust and respect to drive empowerment defined on our own terms – this I believe to be our biggest feat in the years to come. And like our sister and member patient organisations throughout Europe, this will be underpinned by transparency in what we do and how we represent patients, integrity and honesty in the way we operate and engage on behalf of all patients with chronic diseases, and responsibility as part of broader civil society movement striving for a Europe built on values, knowledge, leadership and vision.
