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<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Although I always welcome alternative views, the larger context of the use case I authored was to support
<i>current</i> clinical research CDRNs and PCORnet’s efforts, offering a path toward greater patient control. This includes reasonable real-world policy assumptions for IRBs and CDRNs. It contributes to a known need for standardization of IRBs. Any alternatives
should also consider that context in its objectives. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">I’d rather see an additional use case supporting PPRNs, in which patients voluntarily contribute health data and share it among themselves as well as researchers. There are
use cases for anonymized contributions as well as non-anonymous. The key is ongoing patient participation.
<o:p></o:p></span></p>
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<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">For example, as a sleep apnea patient, I am a member of a data-sharing support group on
<a href="https://myapnea.org/">https://myapnea.org/</a>. This includes member-to-member support, non-anonymously, as well as anonymous research surveys. The privacy model, and its implementation, needs improvement and could benefit from a standardized approach.
<o:p></o:p></span></p>
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<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Another alternative for a new use case is to support pragmatic clinical research, such as the massive COPD study I mentioned in our last phone call. See
<a href="https://www.nihcollaboratory.org/Pages/GR-Slides-02-12-16.pdf">https://www.nihcollaboratory.org/Pages/GR-Slides-02-12-16.pdf</a> for the presentation slides.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"> <o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Glen F. Marshall<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Consultant<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Security Risk Solutions, Inc.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">698 Fishermans Bend<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Mount Pleasant, SC 29464<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Tel: (610) 644-2452
<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Mobile: (610) 613-3084<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">gfm@securityrs.com<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><a href="http://www.securityrisksolutions.com/"><span style="color:#0563C1">www.SecurityRiskSolutions.com</span></a><o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><b><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">From:</span></b><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"> Openid-specs-heart [mailto:openid-specs-heart-bounces@lists.openid.net]
<b>On Behalf Of </b>Josh Mandel<br>
<b>Sent:</b> Tuesday, February 16, 2016 14:21<br>
<b>To:</b> Adrian Gropper <agropper@healthurl.com><br>
<b>Cc:</b> openid-specs-heart@lists.openid.net<br>
<b>Subject:</b> Re: [Openid-specs-heart] Identity, Directory, Agency in UMA<o:p></o:p></span></p>
<p class="MsoNormal"><o:p> </o:p></p>
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<p class="MsoNormal">I've read this doc and littered it with questions and comments. In short: the proposal doesn't make technical sense to me, but I think I understand your desired outcomes. Perhaps best would be to start with an explicit list of these outcomes
instead of attempting a complete protocol flow. I'm inferring these are:<o:p></o:p></p>
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<p class="MsoNormal">1. A patient can participate in research by making her data, de-identified, available to researchers in a flexible way.<o:p></o:p></p>
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<p class="MsoNormal">2. A patient should be able to create distinct "personas" such that two researchers would each see a different persona (same de-identified data, but no link telling Researcher A and Researcher B that they're dealing with the same patient).<o:p></o:p></p>
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<p class="MsoNormal">Is that right? Are there others?<o:p></o:p></p>
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<p class="MsoNormal">On Tue, Feb 16, 2016 at 2:02 PM, Adrian Gropper <<a href="mailto:agropper@healthurl.com" target="_blank">agropper@healthurl.com</a>> wrote:<o:p></o:p></p>
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<p class="MsoNormal"><a href="https://urldefense.proofpoint.com/v2/url?u=https-3A__docs.google.com_document_d_1tmFcqFgA-2DmRsejLYf69DWN8nY-5FgCKdGjs3TMPejviwA_edit-3Fusp-3Ddocslist-5Fapi&d=BQMFaQ&c=qS4goWBT7poplM69zy_3xhKwEW14JZMSdioCoppxeFU&r=c7b1QeR755-dBx2b0xnlepDTylromoEzcLl-6ixmBL3TpXSxSvtAvT553fzSgLpm&m=0FMJmhehRNrnCD-vrLGsH76o-LxCfR27wIjx564HTxU&s=ge46U1ybCs3_0SGaaD9vF2oTUOkCrYvs3eECEm3JTOE&e=" target="_blank">https://docs.google.com/document/d/1tmFcqFgA-mRsejLYf69DWN8nY_gCKdGjs3TMPejviwA/edit</a><o:p></o:p></p>
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<p class="MsoNormal">This is an attempt at a more general alternative to the HEART research use case. I use participant to stand for either a patient or a clinician with PII resources.<o:p></o:p></p>
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<p class="MsoNormal"><o:p> </o:p></p>
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<p class="MsoNormal">Consider this a very early draft to start discussion and not a fully thought-through solution.<o:p></o:p></p>
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<p class="MsoNormal">Can this work? Please comment on this thread if you make changes to the document.<o:p></o:p></p>
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<p class="MsoNormal"><span style="color:#888888"><o:p> </o:p></span></p>
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<p class="MsoNormal"><span style="color:#888888">Adrian<o:p></o:p></span></p>
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<span class="hoenzb">-- </span></span><span class="hoenzb"><o:p></o:p></span></p>
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<p class="MsoNormal"><span style="color:#888888">Adrian Gropper MD<br>
<br>
</span><span style="font-family:"Arial",sans-serif;color:#1F497D">PROTECT YOUR FUTURE - RESTORE Health Privacy!<br>
HELP us fight for the right to control personal health data.<br>
DONATE: <a href="https://urldefense.proofpoint.com/v2/url?u=http-3A__patientprivacyrights.org_donate-2D2_&d=BQMFaQ&c=qS4goWBT7poplM69zy_3xhKwEW14JZMSdioCoppxeFU&r=c7b1QeR755-dBx2b0xnlepDTylromoEzcLl-6ixmBL3TpXSxSvtAvT553fzSgLpm&m=0FMJmhehRNrnCD-vrLGsH76o-LxCfR27wIjx564HTxU&s=HfJbO0I2FJIxcMir8mTEllHJy-pySoZPHot6WRJHeK4&e=" target="_blank">
<span style="color:#0563C1">http://patientprivacyrights.org/donate-2/</span></a></span><span style="color:#888888">
<o:p></o:p></span></p>
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