This is a great breakdown from Will Falk on how patient data rights, interoperability, and emerging AI capabilities are reshaping the landscape of health information access in Canada. At Medchart, we’ve seen how powerful it is when individuals and their representatives have clear, trusted pathways to request and consolidate their health information. Will's vision of a flexible, patient-permissioned “source of truth” aligns closely with the direction the sector is heading. With thoughtful policy and continued innovation, Canada has a real opportunity to modernize how health data moves while keeping patients firmly at the centre. A worthwhile read for anyone following the future of health information management.
Policy, Innovation and policy innovation. Digital health; impact investing. Recovering management consultant. Yoga instructor; dog wrangler.
1. A patient data right is likely to be part of any legislative package forthcoming to replace the Connected Care Act (Bill C-72). 2. There is an existing legal framework for discovery that allows patients and their representatives (usually lawyers) to request data and consolidate it 3. There have been some good companies in the space in Canada, including Medchart led by James Bateman , Dennis Giokas , and others. They have mainly been focused on discovery and insurance underwriting. 4. League has announced their My Health Story agent, which compiles administrative data into an English-language health story that then helps coordinate care. Their fall press release is available on their website. 5. Patients are already reporting using LLMs to compile and review their data. Those with access to Epic MyChart and similar portals are screen scraping results and putting them into AI systems. 6. It seems reasonable that reviewing my own health history is something that I am competent to do up to a point. But I would better if I had assistance (Itis my right to do it poorly if I choose to.) 7. A pre-2020 version of this would be MedicAlert Foundation Canada 's health history, which I understand to be compiled through a 45-minute interview with a nurse or other health practitioner for MediCALERT bracelets of certain types. (This understanding may be out of date. ) 8. Taking and consolidating a medical history is already being done as a Complementary service (not a substitutive one) for pre-visits in some scribing products. This means that the AI is preparing a preliminary history that is then reviewed. For simple histories, this will be correct. For more complex histories, it will require serious physician or other clinician review. This is not dissimilar to having a med student do the history. 9. English is just one language that such a story could be translated into (or from). Others will include spoken languages, HL7, FiHR, or simply delimited. 10. It should be possible at the individual, vendor, institutional, or even regional or provincial level to create a service that would consolidate information into a usable form that could be reviewed and become a source of truth itself. 11.Such a system would not need to be limited to health record data. It could be flexible enough to have the generative AI include either as a summary or attached file, genomic, activity, SDOH, and population health factors. An open source not for profit model is also possible. 12. Once created, this new source of truth could be shared with permissions within a circle of care. There's little new in the points above. Most were recognized by Microsoft when it introduced HealthVault and at Google Health. Others have had such visions. What is different now is that generative AI will, I believe, create a pathway for the average citizen to do this with or without help and advice from the health system.