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Aaron,<br>
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As is typical for use cases, peripheral items in the
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<![endif]-->problem statement narrative add 'color' to make the scenario
life-like. The technical solutions later in the use case do not
depend on them.<br>
<br>
Best,<br>
Glen<br>
<div class="moz-signature">
<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>
</div>
<div class="moz-cite-prefix">On 1/23/16 20:07, Aaron Seib, NATE
wrote:<br>
</div>
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<p class="MsoNormal"><a moz-do-not-send="true"
name="_MailEndCompose"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D">What
does peripheral mean? For decoration purposes only?
Seems to introduce noise and take away from what you are
trying to convey is my point.<o:p></o:p></span></a></p>
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<p class="MsoNormal"><span
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<p class="MsoNormal"><span
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Seib, CEO<o:p></o:p></span></p>
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<p class="MsoNormal"><span
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301-540-2311<o:p></o:p></span></p>
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301-326-6843<o:p></o:p></span></p>
<p class="MsoNormal"><a moz-do-not-send="true"
href="nate-trust.org"><span
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id="_x0000_i1026"
src="cid:part2.04020909.06050701@securityrs.com"
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<p class="MsoNormal"><b><span
style="font-size:10.0pt;font-family:"Tahoma","sans-serif";color:windowtext">From:</span></b><span
style="font-size:10.0pt;font-family:"Tahoma","sans-serif";color:windowtext">
Glen Marshall [SRS] [<a class="moz-txt-link-freetext" href="mailto:gfm@securityrs.com">mailto:gfm@securityrs.com</a>] <br>
<b>Sent:</b> Saturday, January 23, 2016 8:03 PM<br>
<b>To:</b> Aaron Seib, NATE; HEART List<br>
<b>Subject:</b> Re: [Openid-specs-heart] HEART Clinical
Research UMA<o:p></o:p></span></p>
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<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">Aaron,<br>
<br>
In response to your comments on the use case narrative:<o:p></o:p></p>
<ul type="disc">
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level1 lfo1">All of the data including the genomic data? It
will be made available to whom?<o:p></o:p></li>
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<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level2 lfo1">The use case is for clinical data collected
and made available to the clinical researchers for the
study. The nature of the data, e.g., genomics and other
clinical results, is peripheral. <o:p></o:p></li>
</ul>
</ul>
<p class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D">I
don’t know that there is a way to pseudonymize Genomic data
is the point I was trying to make. It is a real issue – I
was trying to suggest it is not peripheral as a result. If
it is peripheral I would remove the reference to gemonics
all together.<o:p></o:p></span></p>
<ul type="disc">
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level1 lfo1">How will her genome be pseudonymized?<o:p></o:p></li>
<ul type="circle">
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level2 lfo1">The specific pseudonymization (and
re-identification) algorithms are likely to be specific to
the clinical research study, informed by the cited
standards. <o:p></o:p></li>
</ul>
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level1 lfo1">If they can access her PHR why do they need to
access the EMR as well? Isn't the point of HEART that she
have a complete record of all of her data in the PHR. What
is in the EHR that is missing from the PHR? Why?<o:p></o:p></li>
<ul type="circle">
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level2 lfo1">I have assumed the current state of data
sharing among EHRs and PHRs. It is peripheral to the use
case.<o:p></o:p></li>
</ul>
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level1 lfo1">This is a transitional use case that will
hopefully go away one day. It may be necessary for now if
there is data in the EHR that isn't transportable to the PHR
but I would hope that the day will come when we aren't
treating the Clinical Operations software as the only source
that inputs to the researchers data warehouse can be
populated. I would argue that PHR's will have more complete
data then the two EMRs as the EMRs will lack the PGHD that
could more readily be gathered via the PHR in comparison to
forcing it to fit into the EMR of the Oncologist.<o:p></o:p></li>
<ul type="circle">
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level2 lfo1">There are multiple EHRs in this use case and,
while I'd like all EHRs and PHRs to be interoperable, they
are not presently. This is peripheral to the use case.<o:p></o:p></li>
</ul>
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level1 lfo1">Am I missing something important. Why is the
patient only able to get a summary of the data?<o:p></o:p></li>
<ul type="circle">
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level2 lfo1">This references reports of disclosures from
the EHRs to the CDRN. A disclosure report for each
transmission to the CDRN is assumed, and that may
reference multiple data sets in summary. The actual
content and frequency of reports is not standardized, and
is influenced by policy outside of the use case. This is
peripheral to the use case.<o:p></o:p></li>
</ul>
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level1 lfo1">[In reference to pharma's offer of a continuing
access agreement and profit-sharing.] Has this ever
happened? Is there anyone (from Pharma) proposing that they
will do this?<o:p></o:p></li>
<ul type="circle">
<li class="MsoNormal"
style="mso-margin-top-alt:auto;mso-margin-bottom-alt:auto;mso-list:l0
level2 lfo1">That is my hypothetical resolution to the
issue of subsequent re-use of Alice's data. That might
have been a more satisfying resolution to the Henrietta
Lacks case. The actual resolution is peripheral to the
use case.<o:p></o:p></li>
</ul>
</ul>
<p class="MsoNormal">Best,<br>
Glen<o:p></o:p></p>
<div>
<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 moz-do-not-send="true" href="mailto:gfm@securityrs.com">gfm@securityrs.com</a><br>
<a moz-do-not-send="true"
href="http://www.SecurityRiskSolutions.com">www.SecurityRiskSolutions.com</a><o:p></o:p></p>
</div>
<div>
<p class="MsoNormal">On 1/23/16 18:39, Aaron Seib, NATE wrote:<o:p></o:p></p>
</div>
<blockquote style="margin-top:5.0pt;margin-bottom:5.0pt">
<p class="MsoNormal"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D">Glen
– I had a lot of questions that I captured as comments in
the attached.</span><o:p></o:p></p>
<p class="MsoNormal"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D"> </span><o:p></o:p></p>
<p class="MsoNormal"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D"> </span><o:p></o:p></p>
<div>
<p class="MsoNormal"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D"> </span><o:p></o:p></p>
<p class="MsoNormal"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D">Aaron
Seib, CEO</span><o:p></o:p></p>
<p class="MsoNormal"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D">@CaptBlueButton
</span><o:p></o:p></p>
<p class="MsoNormal"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D"> (o)
301-540-2311</span><o:p></o:p></p>
<p class="MsoNormal"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D">(m)
301-326-6843</span><o:p></o:p></p>
<p class="MsoNormal"><a moz-do-not-send="true"
href="nate-trust.org"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D;text-decoration:none"><img
id="Picture_x0020_1"
src="cid:part2.04020909.06050701@securityrs.com"
alt="cid:image001.jpg@01D10761.5BE2FE00" border="0"
height="48" width="205"></span></a><o:p></o:p></p>
</div>
<p class="MsoNormal"><span
style="font-size:11.0pt;font-family:"Calibri","sans-serif";color:#1F497D"> </span><o:p></o:p></p>
<div>
<div style="border:none;border-top:solid #B5C4DF
1.0pt;padding:3.0pt 0in 0in 0in">
<p class="MsoNormal"><b><span
style="font-size:10.0pt;font-family:"Tahoma","sans-serif";color:windowtext">From:</span></b><span
style="font-size:10.0pt;font-family:"Tahoma","sans-serif";color:windowtext">
Openid-specs-heart [<a moz-do-not-send="true"
href="mailto:openid-specs-heart-bounces@lists.openid.net">mailto:openid-specs-heart-bounces@lists.openid.net</a>]
<b>On Behalf Of </b>Glen Marshall [SRS]<br>
<b>Sent:</b> Saturday, January 23, 2016 12:58 PM<br>
<b>To:</b> Sarah Squire<br>
<b>Cc:</b> HEART List<br>
<b>Subject:</b> Re: [Openid-specs-heart] HEART
Clinical Research UMA</span><o:p></o:p></p>
</div>
</div>
<p class="MsoNormal"> <o:p></o:p></p>
<p class="MsoNormal">Gladly! See attached PDF.<o:p></o:p></p>
<div>
<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 moz-do-not-send="true" href="mailto:gfm@securityrs.com">gfm@securityrs.com</a><br>
<a moz-do-not-send="true"
href="http://www.SecurityRiskSolutions.com">www.SecurityRiskSolutions.com</a><o:p></o:p></p>
</div>
<p class="MsoNormal" style="margin-bottom:12.0pt"> <o:p></o:p></p>
<div>
<p class="MsoNormal">On 1/23/16 12:53, Sarah Squire wrote:<o:p></o:p></p>
</div>
<blockquote style="margin-top:5.0pt;margin-bottom:5.0pt">
<div>
<p class="MsoNormal">Hi Glen, <o:p></o:p></p>
<div>
<p class="MsoNormal"> <o:p></o:p></p>
</div>
<div>
<p class="MsoNormal">Your sharepoint link isn't working.
Could you send a pdf to the list please?<o:p></o:p></p>
</div>
<div>
<p class="MsoNormal"> <o:p></o:p></p>
</div>
<div>
<p class="MsoNormal">Thanks,<o:p></o:p></p>
</div>
<div>
<p class="MsoNormal"> <o:p></o:p></p>
</div>
<div>
<p class="MsoNormal">Sarah<o:p></o:p></p>
</div>
</div>
<div>
<p class="MsoNormal"><br clear="all">
<o:p></o:p></p>
<div>
<div>
<div>
<div>
<p class="MsoNormal"><span style="color:#888888">Sarah
Squire</span><o:p></o:p></p>
</div>
<div>
<p class="MsoNormal"><span style="color:#888888">Engage
Identity</span><o:p></o:p></p>
</div>
<div>
<p class="MsoNormal"><span style="color:#888888"><a
moz-do-not-send="true"
href="http://engageidentity.com"><a class="moz-txt-link-freetext" href="http://engageidentity.com">http://engageidentity.com</a></a></span><o:p></o:p></p>
</div>
</div>
</div>
</div>
<p class="MsoNormal"> <o:p></o:p></p>
<div>
<p class="MsoNormal">On Fri, Jan 22, 2016 at 2:55 PM,
Glen F. Marshall <<a moz-do-not-send="true"
href="mailto:glen.f.marshall@gmail.com"
target="_blank">glen.f.marshall@gmail.com</a>>
wrote:<o:p></o:p></p>
<div>
<p class="MsoNormal" style="margin-bottom:12.0pt">Team,<br>
<br>
Here is a <b><a moz-do-not-send="true"
href="https://srsmail-my.sharepoint.com/personal/gfm_securityrs_com/_layouts/15/guestaccess.aspx?guestaccesstoken=2QxXSnxuijrIbiElNuU%2bCJIV0G6FBK5uWbdt0FvvVFg%3d&docid=2_1c5c33062f8ee4dbe9dbf61ba9524ca39"
target="_blank">link</a></b> to a read-only
shared copy of the updated Clinical Research (UMA)
use case. It now contains fleshed-out business
prerequisites, sequence diagrams, and some minor
corrections.<br>
<br>
Please respond with your suggestions, corrections,
etc. But please do not alter the document itself,
as the master Word copy and Visio graphics are all
in my personal cloud storage.<br>
<br>
Note I have not included the final sequence diagram
-- review of disclosures and modification of UMA
permissions -- as I'd like to discuss the proper UMA
mechanisms and flow to accomplish the modifications.<br>
<br>
Also note I have specifically made the AS a singular
IRB-selected element within the use case. All
access control policies are determined by the IRB
for ongoing access, with the patient consenting to
them. This also keeps HEART away from ongoing
political, regulatory, and policy matters that are
properly out of scope for our technical work.<br>
<br>
Since I will be at the IHE Connectathon next week, I
won't be on our schedule 1/25 call. Looking forward
to discussions on-list and in February meetings.<br>
<br>
Best,<br>
Glen<br>
<br>
<br>
<o:p></o:p></p>
</div>
<p class="MsoNormal" style="margin-bottom:12.0pt"><br>
_______________________________________________<br>
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<a moz-do-not-send="true"
href="mailto:Openid-specs-heart@lists.openid.net">Openid-specs-heart@lists.openid.net</a><br>
<a moz-do-not-send="true"
href="http://lists.openid.net/mailman/listinfo/openid-specs-heart"
target="_blank">http://lists.openid.net/mailman/listinfo/openid-specs-heart</a><o:p></o:p></p>
</div>
<p class="MsoNormal"> <o:p></o:p></p>
</div>
</blockquote>
<p class="MsoNormal"> <o:p></o:p></p>
</blockquote>
<p class="MsoNormal"><o:p> </o:p></p>
</div>
</blockquote>
<br>
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