Patients are at the heart of health systems – and yet they’re still on the margins of decision-making

Guest article by the European Patients Forum (EPF). 

Extract: 

"Involving patients in decision-making isn’t a courtesy but an overdue structural necessity for health systems.  

Patients hold a unique perspective and expertise that no clinician, regulator or investor can substitute for: their lived experience navigating the healthcare system. Their insights can improve how research is prioritised, designed and translated into practice. When patients are engaged from the start, research is more responsive to real-world needs and studies choose more relevant endpoints, recruit faster and retain participants better.

In innovation and procurement, patient involvement shifts the system from supply-driven – led by what industry can produce and market – towards a more needs-driven approach, focused on meaningful innovations that address unmet patient and societal needs. In healthcare policy, patient organisations are uniquely positioned to hold reforms accountable to those living with their consequences – provided they hold real agency.  

AI adds urgency to this argument. Used well, AI could enhance patient-centred research and care, such as through real-time data collection for more precise monitoring and intervention.  

Yet AI could just as easily reinforce existing biases and reproduce the very exclusions patient-centred approaches aim to address – hence the need for trustworthy AI solutions that the EU’s AI Act seeks to promote..."