EPF calls for meaningful patient involvement in WHO’s AI health roadmap
The WHO Regional Committee for Europe adopted its Roadmap for Action on Artificial Intelligence in Health in the European Region 2026–2033 on 29 October, at its 76th session in Copenhagen.
The European Patients’ Forum (EPF) welcomes the Roadmap as an important framework for the safe, ethical and human-centred use of artificial intelligence (AI) in healthcare. Its priorities align with the findings of EPF’s AI report, published in May 2026. EPF is calling for patient organisations to be recognised as essential partners in AI governance and implementation, and for patients to be meaningfully involved throughout the AI lifecycle.
Patient organisations should be partners in AI governance
EPF welcomes the Roadmap’s focus on health-specific national AI strategies, strong regulatory frameworks, patient safety reporting and clear legal liability standards. It also highlights the need for trustworthy health data governance and digital infrastructure, with data quality, representativeness, security and interoperability at their core. The Roadmap’s commitment to AI literacy for healthcare professionals and the public is another important priority.
However, patient organisations are not explicitly recognised as partners in the AI transformation. Their involvement should be embedded across the Roadmap’s activities, rather than limited to occasional consultation. Patient organisations bring expertise grounded in lived experience and can help ensure that AI tools are relevant, accessible and appropriate for people’s needs.
Involve patients throughout the AI lifecycle
Patient involvement should begin when healthcare needs and research priorities are being identified, and continue through the design, development, testing, deployment and monitoring of AI tools. Early and ongoing engagement can help ensure that these tools address real-world needs and can strengthen patients’ understanding and acceptance of AI-enabled healthcare.
Address AI-generated health information
Patients are increasingly using AI chatbots to find health information. These tools may offer accessible, plain-language support at any time, including for people in remote areas. But their responses can also be misleading or lack the clinical context people need.
Patients and the public need support to understand both the potential and limitations of AI-generated information. Healthcare professionals also need training to discuss this information with patients, correct misconceptions and support informed decisions.
Invest in trustworthy data and patient-led contributions
High-quality, interoperable and secure health data is essential for the safe and effective use of AI in healthcare. Patient organisations can contribute to more representative data, including through patient-led registries, and help build trust among communities that may otherwise be underrepresented. Patients and their representatives should also have a meaningful role in decisions about access to and use of health data.
Measure AI by its benefits for patients
AI should serve clearly defined healthcare objectives and patients’ needs. EPF members identified potential benefits including more personalised care, earlier and more accurate diagnoses, better support for treatment adherence and self-management, stronger prevention, and improved access to reliable health information.
The success of AI should be measured by whether it improves health outcomes, quality of life and equitable access to high-quality care—not simply by how quickly technologies are adopted. A strong, independent civil society voice is essential to keep patients’ needs, fundamental rights and the public interest at the centre of AI policy and practice.
Read EPF’s full reaction to the WHO Roadmap.