With Dr. Irina Koyfman
Notes:
In this Life and Breath Foundation webinar, Dr. Irina Koyfman shared practical, patient-centered ways that artificial intelligence can help people living with sarcoidosis better manage their care. She framed AI not as a doctor or replacement for medical advice, but as a “brilliant librarian” that can help organize information, explain complex medical language, and prepare patients for more productive conversations with their healthcare team.
A major theme of the talk was calibrated trust. Dr. Koyfman emphasized that AI can be incredibly useful, but it is not always correct. She encouraged attendees to “trust and verify,” reminding listeners that AI can sound confident even when it is wrong.
Dr. Koyfman also explained how patients can use AI more effectively by giving it context. She recommended introducing yourself clearly, describing your diagnosis, medications, symptoms, and goals, while avoiding personal health identifiers like names, birthdays, and chart numbers. She suggested using folders or “projects” in AI tools to keep topics organized, such as separate spaces for medications, test results, or upcoming doctor visits.
The webinar also covered practical uses of AI for:
translating medical reports into plain language,
creating medication lists and checking for possible interactions,
preparing questions for specialist visits,
organizing symptoms using frameworks like OLD CART,
and helping patients explain sarcoidosis to family members or caregivers.
Dr. Koyfman encouraged attendees to use AI to support, not direct, their care. She stressed that patients should bring AI-generated summaries or questions to their doctors, but always let clinicians interpret results and make medical decisions. She also noted that AI can help reduce the invisible burden of chronic illness by saving time, improving organization, and making it easier to advocate for oneself.
Overall, the webinar provided a clear message: AI can be a powerful tool for people with sarcoidosis when used thoughtfully, cautiously, and in partnership with healthcare professionals.
