[Openid-specs-heart] Additional Considerations for the "Alice Consents to Clinical Research" Use Case

[Glen Marshall [SRS]]

Team,

Adding to our discussion, there are two patient PHR feedback loops in 
the "Alice Consents to Clinical Research" use case:

  * The EHR-to-PHR link is only incidental to the use case, as it was
    covered in our first use case. However, the translation of clinical
    data to a consumer-understandable form is of possible interest as a
    precondition.  The key issue is whether in "informed consent" it is
    sufficient to provide information to the patient, or whether it's
    necessary to ensure the patient is actually informed by it.  Is
    there a trigger event that indicates the "informed" precondition has
    been met?

    I don't want to lead us all down a rabbit hole, though, so I'd like
    the specification of that event, other than Alice signing the
    consent form, to be declared out of scope.

  * The CDRN-to-PHR link is important to the complete use case. The
    technical issue is how to report disclosures to a patient whose data
    is pseudonymized in the CDRN.  I don't think HEART will solve it, we
    need to include a a "black box" that re-identifies patients for
    communication to the patients and their care providers.  For this
    use case we need to have an UMA permission in the AS, probably from
    the IRB, that allows the "black box" to reidentify an incoming
    transaction for the purpose of disclosure, but not for any other
    purpose.

Your thoughts?

Best,
Glen

-- 

*Glen F. Marshall*
Consultant
Security Risk Solutions, Inc.
698 Fishermans Bend
Mount Pleasant, SC 29464
Tel: (610) 644-2452
Mobile: (610) 613-3084
gfm at securityrs.com
www.SecurityRiskSolutions.com

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