Towards a patient-centred EU mandate: Health policy with and for patients

The High-Level Policy Event "Towards a patient-centred EU mandate: Health policy with and for patients" took place on October 16th, 2024, in Brussels, Belgium. The event marked a step toward enhancing patient representation in healthcare policymaking, reaffirming the commitment to prioritise the voices of patients in every aspect of health policy development.

The High-Level Policy Event began with some introductory words from Marco Greco (President of EPF), who outlined the aims of the #Vote4Patients election campaign and opened a discussion on the definition of a patient organisations, mentioning that EPF had defined a series of criteria to complement the definition of the European Medicines Agency (transparency, legitimacy, democracy, representativeness, accountability and consultation). Stella Kyriakides (European Commissioner for Health and Food Safety) then presented the work of the European Commission, stressing that ‘the voice of patients must be heard if we are to build the resilient, people-centred healthcare systems we seek’. Dr Hans Kluge (Regional Director for Europe, World Health Organization) concluded the opening remarks by stressing the importance of patients' lived experience and the role they play in shaping their healthcare.

The first panel discussion (moderated by Anca Toma, Executive Director of EPF) showed the value of patient engagement throughout the healthcare continuum, from research and development of new medicines to regulatory approval and health technology assessment, and organisation of healthcare systems. Marko Korenjak (President of the European Liver Association) looked at the progress made in recent years and the challenges of moving from ‘patient engagement’ to ‘meaningful patient engagement’. Nathalie Moll (Director General of the European Federation of Pharmaceutical Industries and Associations) indicated that patients should be involved in defining the research question, but also drew attention to certain challenges linked to patient involvement, such as cross-border clinical trials due to the diversity of legislations. Regarding regulatory aspects, Melanie Carr (Head of Stakeholder and Communication Division, European Medicines Agency) cited EMA's scientific publications showing the impact of patient involvement and spoke about the EMA's forthcoming reflection paper on patient experience data. Maya Matthews (Head of Unit, DG SANTE, European Commission) opened a discussion on the topic of conflicts of interest and recommended a solid framework and transparency in this area. Lastly, Frederico Guanais (Deputy Head of the Health Division at the Organisation for Economic Co-operation and Development) spoke about the PaRIS initiative, which measures healthcare systems from the patient's point of view, thereby improving patient outcomes.

The first fireside chat with Members of the European Parliament Adam Jarubas, Andras Kulja and Ondřej Dostál was an opportunity to reflect on topics such as access to medicines, health literacy and patients’ rights. Regarding access to medicines, MEP Adam Jarubas (European People's Party, Poland) pointed out that geography (East or West) was not the only factor to be taken into account, but also the size of a country's market - larger countries having faster access to medicines. On the subject of health literacy, MEP András Kulja (European People's Party, Hungary) drew on his experience as a health influencer and health professional to stress the importance of communicating with patients in lay language and translating complicated medical concepts. Finally, on the subject of patients‘ rights, MEP Ondřej Dostál (Non-attached Member, Czech Republic) drew on his experience as a lawyer to point out that patients’ rights are not the same on paper as in reality.

The second panel discussion (moderated by Elisabeth Kasilingam, Vice-President of EPF, CEO of the European Multiple Sclerosis Platform) reflected on the challenges and opportunities of the patient movement through different angles – advocacy, funding, youth empowerment, digitalisation and the interweaving of national and European levels. Baiba Ziemele (Chair of the Board of the Latvian Network of Patient Organisations) highlighted the problems of funding in Latvia and the very heterogeneous landscape of patient advocacy, which gives great added value to training and support at the European level. The issue of funding for patient organisations was also raised by Ildiko Vajda (Senior Advisor Digital Healthcare, Dutch Patients Federation), who believes that there should be legislation to allow NGOs to be publicly funded while remaining totally independent. Following the discussion on the definition of patient organisations at the beginning of the event, Dr Martin Danner (Secretary General, BAG Selbsthilfe, Germany) stressed the importance for patient organisations to be based on internal democratic processes, which is not always the case in online communities. Konstantina Boumaki (EPF Youth Group member, EPF Board member) presented the perspective of a generally under-represented category of patients, young patients. She commented on the role of online communities, which young patients are close to, highlighting their important role in peer support groups, but also the challenges of tackling misinformation in online communities.

The second fireside chat with Members of the European Parliament Vytenis Povilas Andriukaitis, Katerina Konečná, Stine Bosse and Tilly Metz was an opportunity to reflect on topics such as health technology assessment, antimicrobial resistance (AMR), the revision of the pharmaceutical legislation and EU health funding. MEP Tilly Metz (Greens, Luxembourg) returned to the challenges ahead with the negotiations on the next multiannual financial framework and the scenario of a possible merger of European projects into the Competitiveness Fund. MEP Vytenis Povilas Andriukaitis (Socialists & Democrats, Lithuania) spoke about a problem he has worked on actively as Health Commissioner, AMR, for which he recommended increased efforts in vaccination and a common methodology for evaluating antimicrobials. MEP Stine Bosse (Renew, Denmark) also commented on antimicrobial resistance (AMR) and the need to involve cancer patient organisations in this issue, given the impact of AMR on cancer treatments. As AMR is also part of the pharmaceutical legislation, MEP Kateřina Konečná (Non-attached, Czech Republic) also addressed this topic and presented her views for the new mandate on the pharmaceutical legislation, mentioning in particular some progress made on a shortage reporting mechanism for patients.

Dr Natasha Azzopardi Muscat (Director of the Division of Country Health Policies and Systems, WHO Europe) and Anca Toma (Executive Director of EPF) closed the event. Dr Natasha Azzopardi Muscat recalled the importance of multi-stakeholder cooperation for WHO and invited patients to transform our health systems. Anca Toma closed the #Vote4Patients election campaign, launched in February 2024, and outlined some prospects for the future of EPF's work, including a barometer measuring patient involvement across European countries.