According to this year’s Edelman Trust Barometer Health Special Report, when it comes to addressing health needs and concerns, trust in traditional institutions (government, media, NGOs, and business) has declined since 2023. People are increasingly turning to non-credential sources that feel authentic, relatable, and grounded in personal experience. These are precisely the qualities that define patient advocates, positioning them as some of the most trusted figures in Europe’s health ecosystem.
This shift carries important implications for policymakers. At a time when public trust is fragile, EU institutions have a valuable opportunity, and responsibility, to engage more meaningfully with the voices that embody transparency, legitimacy, and inclusion.
Having once served in a patient advocacy group (PAG), I have seen firsthand how advocates help bridge the gap between policy intent and lived experience. If this vital connection is weakened, we risk missing opportunities for more effective health policy, resilient health systems, and better patient outcomes.
Patient advocacy: a trusted force in health
What makes patient advocates so trusted is not formal credentials (though many have relevant expertise), but their proximity to the realities of illness and care. They combine personal experience with deep understanding, enabling them to offer empathy, clarity, and practical guidance.
But PAGs do more than inform. As Anca Toma, Executive Director at the European Patients’ Forum (EPF) remarked at our Edelman Trust Barometer event, PAGs provide a public service: they translate complex health information into actionable guidance for citizens and decision-makers. They also connect with underserved communities, and represent perspectives often overlooked in institutional settings.
During my time in advocacy, my colleagues and I regularly made the case that genuine patient engagement and empowerment do not just improve individual care, they lead to health systems that are more responsive, sustainable, and equitable. In the EU, where diversity and complexity define the health landscape, this kind of input is not optional, it is essential.
Shrinking Space for Patient Representation
Despite their trusted role, patient advocates seem to be increasingly pushed to the margins of EU health policymaking.
This year, EPF and EURORDIS, launched a campaign to protect the role of patients in decision-making at the European Medicines Agency (EMA), a feature they describe as a hallmark of the agency’s participatory model, now potentially under threat. Concretely, according to the PAGs, policymakers should ensure that patient voting rights are maintained in the key EMA Committees1.
At the same time, EU institutions are introducing new constraints on funding that risk impacting PAGs. The European Parliament recently voted to establish a working group to scrutinise EU funding to NGOs, and the European Commission’s Health and Digital Executive Agency (HaDEA) has begun to limit health NGOs’ use of EU operating grants for any advocacy-related activities.
As a result, PAGs, already operating with limited resources, are being told that core advocacy activities such as organising meetings or sending letters to officials, are no longer eligible for funding. It is worth noting that initiatives like EUPATI, which was originally supported through EU programmes, have helped equip patient advocates with knowledge and tools to engage in exactly these kinds of policy and regulatory processes. Restricting support for such activities now, directly undermines their ability to participate meaningfully in the policy process.
Policy paradox: Trust vs. regulation
This moment reveals a troubling paradox: just as citizens place growing trust in patient advocates, policy trends risk excluding them. This disconnect can have tangible effects, including policy blind spots, reduced transparency, and citizen disengagement.
Several major EU health initiatives, such as the pharma legislation, Critical Medicines Act, and disease-specific strategies, would benefit immensely from the insight of PAGs. At the same time, long-standing priorities championed by the patient community, like the call for a European Action Plan on Rare Diseases, remain unfulfilled despite momentum at Council and WHO level2.
If space for advocacy narrows, patient-led priorities may be delayed, and the perspectives of those most affected will be lost. In essence, without PAG involvement, policymaking risks becoming less inclusive, less effective, and disconnected from the real-world needs that drives equity and innovation.
Safeguarding the patient voice
As the EU shapes the future of health policy, it must create the conditions for patient voices to thrive. This means ensuring meaningful involvement in regulatory and legislative processes, supporting funding models that enable advocacy and participation, and fostering transparent, inclusive engagement across the policy lifecycle.
In a climate of low institutional trust, aligning health policy with the voices that people already trust is not just good governance, it’s a strategic necessity. As the saying goes, “trust isn't given, it's earned”, and those who have earned it through lived experience, deserve a seat at the table.
1EPF and EURORDIS urge EU member states to uphold voting rights for patient representatives in Articles 148 and 149 of the EU General Pharmaceutical Regulation proposal.
2The call for a comprehensive European Union Action Plan on Rare Diseases has been led by EURORDIS and gained significant momentum in recent years. Presidencies of the Council of the EU, have somehow echoed this call since 2022, including France, Czechia, Spain, Hungary and Poland. At global level, a significant milestone was reached in May 2025, with the adoption of the World Health Assembly (WHA) Resolution on Rare Diseases.
Clara Hervas is Vice President for Health & Wellbeing at Edelman Public & Government Affairs Brussels. She previously worked in the patient advocacy space and now advises clients on trust, engagement, and inclusive health policy.
