FHIR Patient Consent

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Has anyone implemented or is anyone considering implementing FHIR coverage for patient consent to share their medical information?

I’m hearing this is mission-critical for countries like Kenya where the PCN model (Primary Care Network) is becoming the corner stone of how the healthcare system will operate. I.e when a patient needs to be referred to another level of site, the site should be able to send the medical record there, but with the patients permission.

FHIR resource: Consent - FHIR v6.0.0-cibuild

Examples: Consent - FHIR v6.0.0-cibuild

(Note that in this case I’m not referring to consent for treatment or surgery, although that is certainly also a use case we’ll need to handle.)

Eg is this something @Mekom or @Brown or @UWash is looking into?

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For example this is something we’d (@cduffy, @pauladams and I) envision in the context of a patient-facing app at times when the patient would be prompted to consent sharing some or all of their SHR. This could be triggered by a referral order made somewhere. I mean, clearly there’s a lot more to unpack before going into the details of specific FHIR resources to model the consent.

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I think the use case could be without a patient facing UI to throw the floss across the canyon here, and as simple as:

  1. Provider in visit with patient, getting ready to refer a patient
  2. Provider requests patient’s consent to share medical records outside of the clinic to the national HIE for other care providers to retrieve in their care
  3. Provider marks consent/no consent into the referral form, which triggers sharing or not sharing.

Then what happens from there might be dependent upon the country/policy:

  • The record is shared to the SHR if consent is obtained - for any provider to retrieve for care of that patient
  • The record is shared to the SHR if consent is obtained - for only the listed facility to retrieve for that provider (this would require more complicated retrieval process validating approval to retrieve)
  • The record is not shared to the SHR, but the SHR records that the patient has opted out of a longitudinal record nationally for sharing their care.

I’m sure there are way more nuances, but that’s a low hanging fruit starting point to think about?

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@janflowers Consents, though are usually not exactly a binary. E.g., if I’m referred to an outside clinic to deal with some minor issue (say dermatitis), I’d probably consent to the outside clinic receiving relevant parts of my medical records, but likely not other things like my HIV status. Similarly, with the referral to a different clinic, my consent is likely time-limited, that is, it’s ok to share part of my record while I’m being treated at the new clinic, but once the treatment is complete, I likely don’t want new information added to my shared record shared with the new clinic.

Even without the patient-facing aspects, these complications make consents difficult.

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Sure, that’s definitely some requirements I’ve seen as well. I’m wondering if we can start with some MVP, and then add those configurations in follow up iterations?

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