Patients are at the heart of health systems. Why are they still on the margins of decision-making?

A new opinion piece by Petra Varkonyi, Cosima Lenz, Yann Heyer and Claudia Louati calls for patient involvement to be embedded systematically in European health research and policymaking.

Patients bring expertise that no other stakeholder can replace: their lived experience of health conditions and navigating healthcare systems. Yet their opportunities to shape research priorities, healthcare policies and funding decisions remain uneven across Europe.

Their involvement can help research respond to real-world needs, improve study design and guide innovation towards unmet needs. In policymaking, patient organisations provide essential insights into how reforms affect those who rely on healthcare services.

Drawing on findings from the EPF Barometer and a CEPS study commissioned by the European Parliament, the authors examine the barriers holding patient involvement back. They explore what needs to change, from sustainable funding to formal participation rights, and why artificial intelligence adds urgency to the debate.

Read more on CEPS website here.