To mark the 13th European Patients’ Rights Day, EFA attended the conference on ‘Delivering patient value throughout the healthcare system’ organised in the European Parliament by the Active Citizenship Network on April 9th.
At EFA we believe that only health systems that include the patient perspective from their planning to their implementation and evaluation can fully work for patients. Therefore value should not only be measured through clinical outputs but also through patient reported outcomes that assess quality of life.
Member of the European Parliament (MEP) Brando Benifei (S&D, Italy), co-host of the event, opened the discussion with an overview on some of the recent highlights on patient rights in the EU: the 2018 European Charter of Health Rights, the raised awareness and increasing role of patients in their care, and the improvement on quality of life, to name a few.
EU needs to develop a forward-looking agenda on health
Mr Benifei clarified that a lot of problems remain on health management in Europe, including vaccine hesitancy, Antimicrobial Resistance (AMR), Health Technology Assessment (HTA), and access to social security and medicines. To succeed in these and other challenges, the EU needs to develop a forward-looking agenda on health and work together with patients.
Andrzej Ryś from the European Commission Directorate General on Health and Food Safety (DG SANTE), referred to the commitment of all Member States to the Sustainable Development Goals and the Commission’s initiatives in areas such as healthy diets and food labelling. He further stressed that a Health-in-all-policies and a multi-stakeholder approach should be the objective.
EU policy schemes on health should be revised
In the first panel that followed, MEP Elena Gentile (S&D, Italy) suggested a fully-fledged revision of the current EU policy schemes: one that is promoting greater awareness and at the same time provides for health systems that better accommodate patient groups such as children and migrants. If re-elected, Mrs Gentile expressed her willingness to support further scientific research for better medicines and quality of life.
Afrodite Katsaraki from the European Cancer Patient Coalition (ECPC) noted the need for a common framework in treating diseases to guarantee equal access and higher service quality. Ann Marie Borg from the European Public Health Alliance (EPHA) called for a holistic approach to integrate other policies affecting health, and therefore less work on silos. Finally, George Griffin from the Federation of European Academies of Medicine highlighted the importance of clarity of aims and education.
EU can do more on NCDs prevention and patients’ rights
In the second panel, Lieve Wierinck (ALDE, Belgium) advocated for greater patient participation and involvement. She expressed the need for a right of patients ‘to be forgotten’ and their right to work. From a policy-maker’s perspective, Mrs Wierinck suggested that the EU should support awareness initiatives, as well as more missions on health in the context of Horizon Europe.
David Vodušek of the European Academy of Neurology pointed out that the EU has a lot more to do in the areas of chronic Non-Communicable Diseases not just from an access, but also from a prevention perspective. Finally, Ella Weggen from Wemos highlighted the need for more competition among pharmaceutical companies and greater price transparency to enable access to treatment.
To know more about the event please visit the ACN website.