The “patient-extended” collaborative model states that there must be collaboration between designers, health professionals, and also patients to allow for an ethical AI in healthcare. Patients are educated on how the technology works, on the related ethical concerns and their own rights as a patient. If a patient can understand how an automatically deployed decision was made, this would enable an empowerment of the patient and a real shared decision-making process where the person of the patient, as a whole, is included. AI and Ethics.Volume 5, pages 385–397, (2025).
This paper introduces the patient-extended collaborative model and five human-focused factors as a framework for ethical AI in healthcare. It explores how practitioners, patients, and developers can design, implement, and use AI responsibly — while preserving human dignity.
Building on this framework, we developed the ELAXIR card deck to support AI literacy and ethical awareness—empowering patients, fostering shared decision-making, and enabling truly patient-centred care in the emerging era of AI in medicine.
KEY MOTIVATIONS
1
Empowering and educating patients is essential for ethical AI in healthcare
Patients need the knowledge and confidence to engage in conversations and decisions shaped by AI technologies.
2
AI literacy must be accessible to all stakeholders
Ethical AI depends on shared understanding—across patients, clinicians, developers, and the public—to ensure responsible design and use.
3
Ethical challenges must be explored through real-world context
Scenarios grounded in healthcare practice help uncover how AI affects human values, enabling critical reflection and better decision-making.
THE PROCESS
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