Public Consultation: Input On The Health Data Governance Principles!

Together with partners, Transform Health has been stewarding the development of a set of representative and human rights-based Health Data Governance Principles. Grounded in UHC, the Principles bring a human rights and equity lens to digital health, and are oriented toward supporting sustainable and resilient public health systems. They seek to align stakeholders around core tenets of data governance, to guide behaviours, actions and policies, creating an environment where all people and communities can share, use, and benefit from health data. The principles target governments, developers and other stakeholders that collect and use health data and can eventually be used as a mechanism to hold them accountable to equity and human rights agendas.

The current draft of the Principles has been developed and driven by civil society through an inclusive and consultative process. Seven global and regional consultations have already been carried out to gather perspectives and expertise from across geographies, sectors and stakeholders. This public consultation will allow the Principles to be further refined, supported, and endorsed by an even wider audience.

The Principles recognise and build on other important principles and initiatives and are aligned with the recommendations coming out of the report of the Lancet and Financial Times Commission on governing health futures 2030, which calls for a more inclusive & principled approach to digital health and “a new approach to the collection and use of health data [that prioritises] protecting individual rights, promoting the public good potential of such data, and building a culture of data justice and equity”.

We welcome partners to provide feedback using the survey below. It is available in English, French & Spanish.

We also encourage partners to share information about the consultation with their networks and to carry out their own regional, national or local consultations to gather further insights from diverse stakeholder groups and to share these as part of the Public Consultation. Resources to support local consultations are available below. For any additional questions, contact [email protected].