From parminder at itforchange.net  Mon Mar 28 16:22:49 2022
From: parminder at itforchange.net (parminder)
Date: Mon, 28 Mar 2022 21:52:49 +0530
Subject: [Digital-health-wg] Fwd: Data Governance Principles centered on
 equity and UHC
In-Reply-To: <16731ff2-b232-f607-3eb6-d682a389b44d@itforchange.net>
References: <16731ff2-b232-f607-3eb6-d682a389b44d@itforchange.net>
Message-ID: <a91940c9-037d-5f46-a8a7-8156b9bebd7b@itforchange.net>




-------- 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: 	??? <parasite at snu.ac.kr>, Susana Barria <sbarria at phmovement.org>, 
Matheus Falc?o <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, ??? <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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