5 Min Read

Patients Use AI – Just Add FHIR!

Dave deBronkart "e-Patient Dave"

Plenary panel at DevDays 2024 – Tuesday 1:30 PM

Next Tuesday at DevDays an extraordinary panel will take the stage: four patients who are already using generative AI for their work in getting healthcare, or in helping others.

Patients using AI?? But what about hallucinations?? What about bias?? Do these people know what they’re doing?? Come see – ask them!

Moderated by Josh Mandel, the panelists will describe what they’re already doing, the value they’re finding, and the visible future they anticipate, including the role FHIR can play.

Josh Mandel, moderator – Chief Architect, Microsoft Health and SMART Health IT. Josh has published his FHIR data and full Electronic Health Information export openly to promote experimentation and understanding.

Hugo Campos has hypertrophic cardiomyopathy, a genetic heart condition. As a patient himself and caregiver for his father, he uses ChatGPT, Claude, Perplexity AI, Gemini Advanced, and NotebookLM. Regarding hallucinations he says, “I don’t ask AI for answers. I use it to help me think.”

Grace Cordovano (virtual) is a board-certified patient advocate with an immense administrative workload for her clients’ paperwork in addition to her own family’s needs. She’s also a member of HITAC, The Light Collective, and the National Academy of Medicine’s AI Code of Conduct project. “People need to realize: patients are end users of AI,” she says.

Dave deBronkart, longtime DevDays patient evangelist, is at a simpler level, using ChatGPT to summarize his visit notes into action items, and to prepare for upcoming visits. He also evangelizes the movement on social media under the #PatientsUseAI hashtag.

Chethan Sarabu MD is part of the OpenNotes Lab project, “where patients, notes, and AI meet,” and board member of The Light Collective. As a pediatrician, chronic patient himself since age 1, and primary carepartner for multiple family members, his lived experience informs his drive to have AI in the hands of patients improve outcomes.

Here are some links they invite you to read as warm-up:

At DevDays in Amsterdam 2018 we heard the powerful keynote A tale of two patients: the difference #FHIR hopes to make with free-flowing data (video), which told of the Sheridan family (whose data they typed into immense spreadsheets to rescue their immobilized daughter) and of Michael Morris, who created his own cancer dashboard using early FHIR feeds … so he could show his four hospitals a unified view of his data that none of them could see. (Patients with data tools can truly be innovators.) 

That keynote asked what life would have been like for the Sheridans if their data had been available via FHIR. Now imagine if each case could be analyzed by an LLM, fed with FHIR, driven by good prompts! That’s the world we’re approaching today.

Then at the next DevDays, Seattle 2019, the HL7 Patient Empowerment workgroup was conceived. As Dave blogged at the time, HL7 board members said “FHIR exists to serve patient needs.” 

DevDays loves bringing exemplary patients to the stage. Come hear them in Minneapolis – and talk with them later at the Meet & Greet.

Want to join us? It’s not too late to register for DevDays 2024.