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<p class="MsoNormal">No efforts at exchanging health data besides patient control will ever work--- medical records will never go where they’re needed for treatment because the corporations holding our data believe it’s a corporate asset. Treating sick people
will never be a corporate priority.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal"><a name="_MailEndCompose">A Jan 2017 survey found 89% of 12,090 patients withheld information from providers in 2016, ie, they risked health and life to keep sensitive data private! Full stop: US HIT systems cause people to withhold health
data, which was never true in the Paper Age because NO data moved w/o consent (except to save a life). BlackbookMarketResearch also found patients were very concerned about the sale and use of prescription data (90%) and mental health notes (99%).
</a><a href="https://blackbookmarketresearch.newswire.com/news/healthcares-digital-divide-widens-black-book-consumer-survey-18432252"><span style="mso-bookmark:_MailEndCompose">https://blackbookmarketresearch.newswire.com/news/healthcares-digital-divide-widens-black-book-consumer-survey-18432252</span><span style="mso-bookmark:_MailEndCompose"></span></a><span style="mso-bookmark:_MailEndCompose">
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<p class="MsoNormal"><span style="mso-bookmark:_MailEndCompose">Trust in physicians and medical records was extremely high from Hippocrates through the Paper Age. No system will work without public trust. 95% of the US public wants to control health data.<o:p></o:p></span></p>
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<p class="MsoNormal"><span style="mso-bookmark:_MailEndCompose">deb<o:p></o:p></span></p>
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<p class="MsoNormal"><b>From:</b> agropper@gmail.com [mailto:agropper@gmail.com] <b>
On Behalf Of </b>Adrian Gropper<br>
<b>Sent:</b> Thursday, January 18, 2018 10:52 PM<br>
<b>To:</b> Josh Mandel <jmandel@gmail.com><br>
<b>Cc:</b> HEART List <openid-specs-heart@lists.openid.net><br>
<b>Subject:</b> Re: First new ONC policy draft doesn't address HEART<o:p></o:p></p>
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<p class="MsoNormal" style="margin-bottom:12.0pt">I always hold both Debbie and you as examples of the best of what ONC has done under HITECH and I trust that will continue under Cures.<o:p></o:p></p>
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<p class="MsoNormal">To add a bit of fuel to this fhir (sorry), here's the VA trying to deal with consent
<a href="https://www.federalregister.gov/documents/2018/01/19/2018-00758/consent-for-release-of-medical-records">
https://www.federalregister.gov/documents/2018/01/19/2018-00758/consent-for-release-of-medical-records</a> TL;DR the VA wants to accept a consent without directly getting it from the patient.
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<p class="MsoNormal" style="margin-bottom:12.0pt">Federations only work among peers. The TEFCA Common Agreement, no matter how you spin it, is a national health record with policies controlled by HHS. A federation that crosses VA, CMS, private hospitals, labs,
pharmacies, payers, individual physicians, all the way to long-term-care facilities and addiction treatment programs can only be based on robust patient consent as the common denominator.
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HEART is the only standards-based path to robust patient consent.<o:p></o:p></p>
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<p class="MsoNormal">Adrian<o:p></o:p></p>
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<p class="MsoNormal">On Thu, Jan 18, 2018 at 11:01 PM, Josh Mandel <<a href="mailto:jmandel@gmail.com" target="_blank">jmandel@gmail.com</a>> wrote:<o:p></o:p></p>
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<p class="MsoNormal">Thanks for this piece, Adrian! I'm looking forward to reading through the Trusted Exchange Framework proposal this weekend.<o:p></o:p></p>
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<p class="MsoNormal">For what it's worth: through my participationt, SMART has taken part in the HEART development process. I've made an effort to provide feedback for HEART and UMA along the way, and I'm excited about this technology stack. It's still a far
reach for much of today's Health IT ecosystem, but it's an important set of components to get right.<o:p></o:p></p>
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<p class="MsoNormal">Best,<o:p></o:p></p>
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<p class="MsoNormal">Josh<o:p></o:p></p>
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<p class="MsoNormal"><o:p> </o:p></p>
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<p class="MsoNormal">On Jan 18, 2018 21:46, "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">but may be headed in our direction. <br>
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<a href="http://thehealthcareblog.com/blog/2018/01/18/a-patients-experience-view-of-the-tefca/" target="_blank">http://thehealthcareblog.com/blog/2018/01/18/a-patients-experience-view-of-the-tefca/</a><br>
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Lots more work to do.<br clear="all">
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<p class="MsoNormal">Adrian<o:p></o:p></p>
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<p class="MsoNormal">Adrian Gropper MD<br>
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<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.</span><o:p></o:p></p>
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<p class="MsoNormal"><span style="font-size:10.0pt;font-family:"Arial",sans-serif;color:#1F497D">DONATE: </span><span style="font-size:10.0pt;font-family:"Arial",sans-serif;color:blue"><a href="https://patientprivacyrights.org/donate-3/" target="_blank"><span style="color:#1155CC">https://patientprivacyrights.org/donate-3/</span></a></span><o:p></o:p></p>
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