IT for Change's Parminder Singh is the co-chair of the Data Principles Circle of Transform Health, a global initiative which works in coalition towards Universal Health Coverage goal of the SDGs. The initiative recently released its draft Health Data Governance Principles. This is the first set of global health data principles which goes beyond the general pitch of privacy and security to primarily focus on health equity, with its tagline being 'Towards universalising the benefits of digtialisation of health'. It is divided into three parts, stating the three key objectives 'Protect People', 'Promote Health Value' and "Promote Equity'. All parts of the Principles document is touched by the brush of equity. Another significant first of these Principles is that it focuses as much on collective rights as individual. The Principles make a brave departure in explicitly recognizing the right of both individuals and communities to 'own' their health data, which signifies the greatest extent possible of control over their data. At the same time the Principles recognize that many kinds of data can add great value to our health systems, and safe sharing of such data must be encouraged and facilitated.
Find out more about Transform Health and the guidelines here.
We are now inviting feedback on the principles through an open public consultation from 27th October to 3rd December, 2021, which will allow the Principles to be further refined, supported, and endorsed by an even wider audience.
You can go through the draft principles and share your feedback through the online survey on the Public Consultation page, which also includes further information and resources to support local consultations.