Stream: smart
Topic: ONC Tech Forum
Isaac Vetter (Aug 10 2020 at 19:45):
Is the sharing actually "with the patient"? Not really "with the 3rd party app. The person uses the app to systematically query the data, but the Data Holder is actually sharing the data with the person, right? not with the app company. I think it is important to think about who is sharing with whom very accurately. The data that is released, is released to the Patient, and is under the patient's control. We need to focus on sharing data with consumers--not 3rd party apps. The consumer allows the third party app to be their query agent....but the patient does not give up their ownership/control of their data. NOT UNLESS THE APP Requires the Person to give up their control. THIS NEEDS to be clear. Patients need to be educated about what to expect and watch for.
Excellent point Lisa, The point here is indeed that the Patient is authorizing the app. So the important factor is the Patient, not the app. This is key to the PERMIT authorization. This said, the app is a party to the communication, which brings up some risks and responsibilities.
Hey @Lisa Nelson , in practice the vast majority of patient-facing apps do require the patient to give up ownership/control of their data. The "Data Holder" very literally and technically gives the data to the app, with the patient's approval. You should assume that almost every app will own the data that a patient approves to share.
Jason Walonoski (Aug 10 2020 at 22:05):
Isaac Vetter said:
Hey Lisa Nelson , in practice the vast majority of patient-facing apps do require the patient to give up ownership/control of their data. The "Data Holder" very literally and technically gives the data to the app, with the patient's approval. You should assume that almost every app will own the data that a patient approves to share.
IANAL, but this is problematic. We should be moving towards a future where each individual owns their own health data, and apps adopt a patient data use agreement similar to the following: https://github.com/patient-data-manager/pdua
Josh Mandel (Aug 10 2020 at 22:18):
I don't think anything about the SMART on FHIR model contradicts that vision @Jason Walonoski -- I certainly hope not, because it's a vision I share.
Josh Mandel (Aug 10 2020 at 22:19):
Though I'll say it's not the only approach that I fits with ONC's policy push, and in the near term I expect to see quite a spectrum of "patient control"' in app terms of service.
Last updated: Apr 12 2022 at 19:14 UTC
