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Guest article by Yann Heyer, policy officer at the European Patients’ Forum (EPF)

Although its importance is increasingly recognised, patient involvement is not taken for granted and is not utilised to its full potential. The European Patients’ Forum (EPF) campaign for the 2024 elections (#Vote4Patients) focused precisely on this issue. Following on from our campaign, EPF is working in 2025 – in collaboration with its national coalitions – on a Barometer of patient organisations’ involvement in health policy at national level. This barometer will assess and map the level of patient involvement in health policy across Europe, identify good practice in patient involvement and examine the barriers to patient involvement.  

As a literature review suggests, there remains a lack of transparency about the barriers to patient involvement, and whether and how patient organisations are involved in health policy at national level. Objective measures are needed to provide consistent and usable information. While we await the objective measures provided by the Barometer results – which will be presented at EPF’s Congress (26-27 November 2025) – we do of course already have information on the main barriers to patient involvement.   

• Political recognition of patient organisations. Patient organisations are still sometimes seen as a ‘tick box’ or consulted at the end of the process. We would like patient organisations to be involved at an earlier stage in the health policy-making process and to move increasingly from an advisory role to a decision-making and collaborative role.
• Insufficient capacity of patient organisations in certain areas. This is where the role of national and European umbrella organisations with capacity building exercises and trainings come into play. 
• Fragmentation of healthcare systems. For instance, the OECD’s flagship report on Patient-Reported Indicator Surveys (PaRIS) states that ‘8 out of 10 primary care users live with a chronic disease, and more than half live with multiple chronic diseases’. The OECD also reports that “The management of multiple chronic diseases is generally much more complex and resource-intensive than the management of a single condition, requiring health systems to provide (…) well-coordinated care”. Patient organisations are adapting their approach to increasingly complex healthcare systems, with patients living with different combinations of chronic conditions.
• The lack of resources. Access to sustainable and regular funding, particularly through operating grants and multiannual financial frameworks, is what allows patient organisations to plan their activities long term, have stronger impact, and bring patients’ unique expertise to health policymaking.  

In this respect, EPF, in close coordination with EPHA and the EU4Health Civil Society Alliance, is calling for health to be given a prominent place in the European Union’s seven-year budget, in a challenging context marked by the importance attached to geopolitical issues. This budget will have an impact on the funds allocated to health, including EU4Health and Horizon Europe projects, on which some patient organisations are dependent financially. This budget will therefore have an impact on patient representation at European and national level. The MFF should be seen as an opportunity to learn from the lessons of the COVID-19 pandemic by recognising the role played by patient organisations in shaping health policy.