I replied to all of the comments so far. <div><br></div><div>1 - My principal outcome relates to managing directories of FHIR resources for clinical purposes. </div><div><br></div><div>2 - A participant should be able to create distinct personas as a way to avoid unwarranted surveillance. (Note that this applies equally to patients and clinicians as participants.)</div><div><br></div><div>3 - A patient can offer her de-identified data to researchers using the same AS that she uses for all her RSs. This provides researches the benefit of access to non-clinical data such as location, environment, social, etc...</div><div><br></div><div>Adrian<br><br>On Tuesday, February 16, 2016, Josh Mandel <<a href="mailto:Joshua.Mandel@childrens.harvard.edu">Joshua.Mandel@childrens.harvard.edu</a>> wrote:<br><blockquote class="gmail_quote" style="margin:0 0 0 .8ex;border-left:1px #ccc solid;padding-left:1ex"><div dir="ltr">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:<div><br></div><div>1. A patient can participate in research by making her data, de-identified, available to researchers in a flexible way.</div><div>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).</div><div><br></div><div>Is that right? Are there others?</div><div><br></div></div><div class="gmail_extra"><br><div class="gmail_quote">On Tue, Feb 16, 2016 at 2:02 PM, Adrian Gropper <span dir="ltr"><<a href="javascript:_e(%7B%7D,'cvml','agropper@healthurl.com');" target="_blank">agropper@healthurl.com</a>></span> wrote:<br><blockquote class="gmail_quote" style="margin:0 0 0 .8ex;border-left:1px #ccc solid;padding-left:1ex"><div><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><br></div><div><br></div><div>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.</div><div><br></div>Consider this a very early draft to start discussion and not a fully thought-through solution.<div><br></div><div>Can this work? Please comment on this thread if you make changes to the document.</div><span><font color="#888888"><div><br></div><div>Adrian</div><br><br>-- <br><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><br><div dir="ltr">Adrian Gropper MD<span style="font-size:11pt"></span><br><br><span style="font-family:"Arial",sans-serif;color:#1f497d">PROTECT YOUR FUTURE - RESTORE Health Privacy!</span><span style="font-family:"Arial",sans-serif;color:#1f497d"><br>HELP us fight for the right to control personal health data.</span><span style="font-family:"Arial",sans-serif;color:#1f497d"></span><span style="font-family:"Arial",sans-serif;color:#1f497d"><br>DONATE:
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</blockquote></div><br><br>-- <br><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><br><div dir="ltr">Adrian Gropper MD<span style="font-size:11pt"></span><br><br><span style="font-family:"Arial",sans-serif;color:#1f497d">PROTECT YOUR FUTURE - RESTORE Health Privacy!</span><span style="font-family:"Arial",sans-serif;color:#1f497d"><br>HELP us fight for the right to control personal health data.</span><span style="font-family:"Arial",sans-serif;color:#1f497d"></span><span style="font-family:"Arial",sans-serif;color:#1f497d"><br>DONATE:
<a href="http://patientprivacyrights.org/donate-2/" target="_blank"><span style="color:#0563c1">http://patientprivacyrights.org/donate-2/</span></a></span><span style="color:#1f497d"></span>
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