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Team,<br>
<br>
Adding to our discussion, there are two patient PHR feedback loops
in the "Alice Consents to Clinical Research" use case: <span
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<ul>
<li>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? <br>
<br>
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.<br>
<br>
</li>
<li>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.<br>
</li>
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Your thoughts?<br>
<br>
Best,<br>
Glen <span style="color: rgb(34, 34, 34); font-family: arial,
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<div class="moz-signature">-- <br>
<p><b>Glen F. Marshall</b><br>
Consultant<br>
Security Risk Solutions, Inc.<br>
698 Fishermans Bend<br>
Mount Pleasant, SC 29464<br>
Tel: (610) 644-2452<br>
Mobile: (610) 613-3084<br>
<a class="moz-txt-link-abbreviated" href="mailto:gfm@securityrs.com">gfm@securityrs.com</a><br>
<a class="moz-txt-link-abbreviated" href="http://www.SecurityRiskSolutions.com">www.SecurityRiskSolutions.com</a></p>
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