EPF Barometer
Measuring the involvement of patient organisations across Europe
The EPF Barometer on the Involvement of Patient Organisations in Health Policy at National Level is a first-of-its-kind initiative developed by the European Patients’ Forum (EPF) to assess how patient organisations are involved in health policymaking across Europe.
Based on contributions from 27 national coalitions of patient organisations across 23 countries, the Barometer provides a unique overview of the structures, mechanisms and practices that support (or hinder) meaningful patient involvement in health policy. It examines participation across eight key areas, including decision-making processes, transparency, health technology assessment (HTA), funding, capacity building and the overall impact of patient organisations on healthcare systems.
Why Measure Patient Involvement?
Patient organisations bring the collective experience of people living with chronic conditions and diseases into healthcare decision-making. Their involvement helps ensure that policies, services and healthcare reforms better reflect patients’ needs and realities.
Yet across Europe, there is limited information about how patient organisations are involved in policymaking, whether their participation is meaningful, and what barriers they face. The EPF Barometer was created to address this gap by identifying good practices, highlighting challenges and supporting stronger, more transparent and more inclusive health governance.
Key findings
Involvement varies significantly across Europe
The Barometer reveals clear geographical disparities. Northern and North-Western European countries generally perform better, while patient involvement remains more limited in many Eastern and South-Eastern European countries.
Institutional frameworks remain incomplete
While around half of the countries surveyed report having a formal framework for patient involvement, more than one-third report having no framework at all. Only four countries have a formal legal definition of patient organisations.
Transparency is a major challenge
Most countries lack clear and transparent criteria for involving patient organisations in policy and regulatory processes. In many cases, participation remains ad hoc rather than based on structured and accountable mechanisms.
Resources are the biggest barrier
More than 90% of respondents identified lack of resources as the main obstacle to meaningful involvement. Many organisations operate with limited funding and insufficient access to capacity-building opportunities.
Patient organisations are driving change
The Barometer highlights more than 30 examples of how patient organisations contribute to stronger healthcare systems, improved patient rights, better access to care, health literacy initiatives, digital health developments and disease-specific advocacy across Europe.