Background/aims: Patients have largely been excluded from discussions on the use of their health data in developing medical artificial intelligence (AI), despite being directly affected by its integration into care. This study assessed ophthalmology patients' perspectives on AI to inform patient-aligned development and implementation.
Methods: We conducted a cross-sectional survey across ophthalmology clinics in a large academic hospital system in New York City. Consecutive patients were approached in waiting rooms by a research coordinator to maximise sociodemographic diversity and minimise bias from digital literacy or access. The survey, developed by experts in AI, ethics, ophthalmology and survey methodology, was administered via paper and Qualtrics. It addressed attitudes towards AI in clinical scenarios, willingness to share various types of personal data for AI model development and understanding of AI in ophthalmology.
Results: Among 403 respondents, 67% reported a low or no understanding of AI, and 71% expressed interest in learning more. Patients prioritised physician involvement and transparency. Comfort decreased with task complexity: highest for screening, lower for diagnosis and lowest for treatment/surgery. For model development, patients were more comfortable sharing de-identified optical coherence technology or lab data than facial images or genetic data. 90% felt consent was always necessary when using personal data to train AI models.
Conclusions: These findings highlight the need for patient education and robust data consent protocols. Implementing an opt-out system for retrospective data use may enhance trust while supporting innovation. Integrating patient perspectives into AI governance can foster trust and transparency in ophthalmology and beyond.
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