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-------- Forwarded Message --------
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<th valign="BASELINE" nowrap="nowrap" align="RIGHT">Subject:
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<td>Data Governance Principles centered on equity and UHC</td>
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<th valign="BASELINE" nowrap="nowrap" align="RIGHT">Date: </th>
<td>Mon, 28 Mar 2022 21:39:09 +0530</td>
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<th valign="BASELINE" nowrap="nowrap" align="RIGHT">From: </th>
<td>parminder <a class="moz-txt-link-rfc2396E" href="mailto:parminder@itforchange.net"><parminder@itforchange.net></a></td>
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<th valign="BASELINE" nowrap="nowrap" align="RIGHT">To: </th>
<td>정준호 <a class="moz-txt-link-rfc2396E" href="mailto:parasite@snu.ac.kr"><parasite@snu.ac.kr></a>, Susana Barria
<a class="moz-txt-link-rfc2396E" href="mailto:sbarria@phmovement.org"><sbarria@phmovement.org></a>, Matheus Falcão
<a class="moz-txt-link-rfc2396E" href="mailto:matheus.falcao@usp.br"><matheus.falcao@usp.br></a>, Marcelo Fornazin
<a class="moz-txt-link-rfc2396E" href="mailto:fornazin@gmail.com"><fornazin@gmail.com></a>, Raquel Rachid
<a class="moz-txt-link-rfc2396E" href="mailto:raquel.rachid@hotmail.com"><raquel.rachid@hotmail.com></a>, Elias Kondilis
<a class="moz-txt-link-rfc2396E" href="mailto:elias.kondilis@gmail.com"><elias.kondilis@gmail.com></a>, Al Dahdah Marine
<a class="moz-txt-link-rfc2396E" href="mailto:marine.aldahdah@ehess.fr"><marine.aldahdah@ehess.fr></a>, Peter Benjamin
<a class="moz-txt-link-rfc2396E" href="mailto:peter@healthenabled.org"><peter@healthenabled.org></a>, <a class="moz-txt-link-abbreviated" href="mailto:cheehan@twnetwork.org">cheehan@twnetwork.org</a>,
Ridwan Oloyede <a class="moz-txt-link-rfc2396E" href="mailto:ro@techhiveadvisory.org.ng"><ro@techhiveadvisory.org.ng></a>, gaulsan
<a class="moz-txt-link-rfc2396E" href="mailto:gaulsan@gmail.com"><gaulsan@gmail.com></a>, <a class="moz-txt-link-abbreviated" href="mailto:unoccupy@gmail.com">unoccupy@gmail.com</a>,
Sundararaman T <a class="moz-txt-link-rfc2396E" href="mailto:sundar@phmovement.org"><sundar@phmovement.org></a>, Sulakshana
Nandi <a class="moz-txt-link-rfc2396E" href="mailto:sulakshana@phmovement.org"><sulakshana@phmovement.org></a>, Deepika Joshi
<a class="moz-txt-link-rfc2396E" href="mailto:deepika@phmovement.org"><deepika@phmovement.org></a>, Sanya Reid Smith
<a class="moz-txt-link-rfc2396E" href="mailto:sanya@twnetwork.org"><sanya@twnetwork.org></a>, Gargeya Telakapalli
<a class="moz-txt-link-rfc2396E" href="mailto:gargeya.t@phmovement.org"><gargeya.t@phmovement.org></a>, Abbas
<a class="moz-txt-link-rfc2396E" href="mailto:abbas@itforchange.net"><abbas@itforchange.net></a>, <a class="moz-txt-link-abbreviated" href="mailto:anita@itforchange.net">anita@itforchange.net</a>
<a class="moz-txt-link-rfc2396E" href="mailto:anita@itforchange.net"><anita@itforchange.net></a>, Deepti Bharthur
<a class="moz-txt-link-rfc2396E" href="mailto:deepti@itforchange.net"><deepti@itforchange.net></a>,
<a class="moz-txt-link-abbreviated" href="mailto:digital-health-wg@justnetcoalition.org">digital-health-wg@justnetcoalition.org</a>, 이상윤
<a class="moz-txt-link-rfc2396E" href="mailto:leesangyun68@gmail.com"><leesangyun68@gmail.com></a></td>
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<p>A group called TransformHealth has developed a set of Health
Data Governance Principles that are centred on health equity and
Universal Health Coverage. </p>
<p>I think this is the first set of health data principle that
principally focuses not just on technical issues, nor only on
privacy, but is mainly oriented to the socio-political objective
of health equity. The by line of the principles doc is -
'Universalising the benefits of health digitalisation'. While
not perfect, this document invokes path-breaking concepts of
collective rights over health data, and the right to share the
benefits arising from one's health data (for individuals, as
well as groups and communities). <br>
</p>
<p>The still embargoed text is at
<a class="moz-txt-link-freetext"
href="https://transformhealthcoalition.org/wp-content/uploads/2022/03/Health-Data-Governance-Principles-Embargoed-Copy.pdf"
moz-do-not-send="true">https://transformhealthcoalition.org/wp-content/uploads/2022/03/Health-Data-Governance-Principles-Embargoed-Copy.pdf</a></p>
<p>Early endorsements are open till the 4th of April. The document
will be released in public on the 7th of April.</p>
<p>This is to submit the document for your comments, and in case
PHM wants to endorse it..</p>
<p>(Disclosure: IT for Change had the co-chairship of the group
that drafted these principles. If we may say so, many of the
important concepts like collective rights, and right to share
benefits arising from, have been developed and contribute by us
to this document. We may have in general played an important
part to so centrally, and substantively, focus this document on
health equity.)</p>
<p><b>As mentioned, this document is for restricted circulation
till the 4th.Circulation is only for the purpose for obtaining
initial pre-public release endorsements. <br>
</b></p>
<p>Meanwhile, whether or not people/ groups are willing to endorse
it, it may be worth a discussion, and as an input to this
group's work..</p>
<p>parminder <br>
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