[Digital-health-wg] Fwd: Data Governance Principles centered on equity and UHC
parminder
parminder at itforchange.net
Mon Mar 28 16:22:49 UTC 2022
-------- Forwarded Message --------
Subject: Data Governance Principles centered on equity and UHC
Date: Mon, 28 Mar 2022 21:39:09 +0530
From: parminder <parminder at itforchange.net>
To: 정준호 <parasite at snu.ac.kr>, Susana Barria <sbarria at phmovement.org>,
Matheus Falcão <matheus.falcao at usp.br>, Marcelo Fornazin
<fornazin at gmail.com>, Raquel Rachid <raquel.rachid at hotmail.com>, Elias
Kondilis <elias.kondilis at gmail.com>, Al Dahdah Marine
<marine.aldahdah at ehess.fr>, Peter Benjamin <peter at healthenabled.org>,
cheehan at twnetwork.org, Ridwan Oloyede <ro at techhiveadvisory.org.ng>,
gaulsan <gaulsan at gmail.com>, unoccupy at gmail.com, Sundararaman T
<sundar at phmovement.org>, Sulakshana Nandi <sulakshana at phmovement.org>,
Deepika Joshi <deepika at phmovement.org>, Sanya Reid Smith
<sanya at twnetwork.org>, Gargeya Telakapalli <gargeya.t at phmovement.org>,
Abbas <abbas at itforchange.net>, anita at itforchange.net
<anita at itforchange.net>, Deepti Bharthur <deepti at itforchange.net>,
digital-health-wg at justnetcoalition.org, 이상윤 <leesangyun68 at gmail.com>
A group called TransformHealth has developed a set of Health Data
Governance Principles that are centred on health equity and Universal
Health Coverage.
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).
The still embargoed text is at
https://transformhealthcoalition.org/wp-content/uploads/2022/03/Health-Data-Governance-Principles-Embargoed-Copy.pdf
Early endorsements are open till the 4th of April. The document will be
released in public on the 7th of April.
This is to submit the document for your comments, and in case PHM wants
to endorse it..
(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.)
*As mentioned, this document is for restricted circulation till the
4th.Circulation is only for the purpose for obtaining initial pre-public
release endorsements.
*
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..
parminder
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