New Tool ELAXIR Empowers Patients in AI Health Ethics
Researchers have created a new tool, ELAXIR, to improve AI literacy and raise awareness of the ethical challenges of using AI in healthcare. It comprises a set of physical and digital cards, supported by complementary learning resources.
Purpose of ELAXIR
ELAXIR aims to strengthen understanding of key terminology and concepts, as well as promote discussion and reflection among healthcare professionals, patients, the public, researchers, and AI developers. ELAXIR stands for Ethical Learning of Artificial (eXplainable) Intelligence & Reflection.
The Growing Role of AI in Healthcare
AI is increasingly being used in research and practice in healthcare—from AI approaches to analyze electronic health records to novel methods for remote monitoring. There is a growing interest in the ethical use of AI in healthcare, including concepts such as:
- Patient data privacy
- Algorithmic bias
- Transparency
- Human oversight
Building literacy around these principles is essential to ensuring AI is used responsibly as a valuable healthcare resource.
Development and Design of ELAXIR
The ELAXIR project was led by Dr. Raquel Iniesta, Reader in Statistical Learning for Precision Medicine at the Institute of Psychiatry, Psychology & Neuroscience, King’s College London. The cards were co-designed with an international team of researchers—including developers, clinicians, and individuals with lived experience—through patient and public engagement and involvement (PPIE).
Empowering Patients Through Collaboration
The basis of the ELAXIR tool is the “patient-extended” collaborative model, which proposes that to ensure the ethical use of AI in healthcare, patients must understand how AI works and their rights in this area. This understanding empowers them to make informed decisions regarding the use of AI in their care. This collaborative model necessitates cooperation between developers, clinicians, and patients to design, implement, and use AI safely, with a patient-centered approach at its core.
Risks and Ethical Considerations
Time magazine recently named the Architects of AI its ‘2025 Person of the Year’. While AI’s potential in healthcare is enormous, it also poses serious risks, especially for vulnerable populations. Concerns include mental health harms and, in extreme cases, links to suicide or violence. ELAXIR cards are designed to empower everyone, not just experts, with the knowledge needed to understand these risks and use AI responsibly.
Components of the ELAXIR Deck
The ELAXIR deck of cards is composed of three parts:
- Master Cards: These explain foundational concepts such as ‘AI’ and ‘Ethics’.
- Scenario Cards: 13 thought-provoking scenarios co-designed by clinicians, developers, and patients to prompt discussion on the use of AI in healthcare. Examples include:
- Should AI be used to make decisions about a person’s treatment without them understanding how it works?
- What should a patient do when a Doctor and AI give conflicting advice?
- How should bias in AI be addressed, particularly when AI works less effectively for marginalized communities?
- Ethical AI Dictionary: An A to Z guide explaining key terminology such as ‘algorithm’ and ‘risk’, linked to the scenarios.
Target Audience and Accessibility
The cards are designed to be accessible to a wide range of audiences, suitable for discussions with PPIE groups and can even be used with children aged 10 and upwards. The cards are accompanied by a website featuring additional resources, articles, podcasts, and research on ethical AI in healthcare.
Conclusion
Since October 2023, Dr. Iniesta has further developed the “patient-extended” collaborative model, emphasizing the importance of educating all stakeholders—patients, clinicians, and developers—on medical ethics and the fundamentals of AI. This initiative aims to prevent dehumanization while fostering empowerment within an AI-assisted, patient-centered healthcare system.
This model is part of a ‘five-facts’ approach, offering a simple, evidence-based explanation of ethical AI and accountability frameworks, published in the ‘AI and Ethics’ journal in October 2023. The ELAXIR cards represent a crucial step in implementing this framework in practice.
