Today Transform Health Coalition (THC) have launched the Health Data Governance Principles, the result of an extensive period of consultation with over 200 contributors from over 130 organisations. These principles have been largely driven by civil society, including STOPAIDS who input into the consultation process. We proudly endorse these principles, which we hope will be a key resource for all stakeholders involved in the governance of health data in promoting equitable data governance which benefits all communities, particularly those who are most marginalised.
Transform Health Coalition’s 8 Health Data Governance Principles are as follows:
- Protect individuals & communities
- Build trust in data systems
- Ensure data security
- Establish data rights & ownership
- Promote equitable benefit from health data
- Facilitate innovation using health data
- Promote data sharing & interoperability
- Enhance health systems & services
STOPAIDS welcomes within the principles the explicit recognition of how the governance of health data can impact the rights of marginalised populations as well as the importance of meaningfully including civil society and communities. We are also pleased to see the demand that ‘informed consent’ must be articulated in accessible ways, particularly for those unfamiliar with technical digital language, and the recognition that ‘informed consent’ includes the right to also opt out of services which do not serve them.
STOPAIDS previously highlighted that there should be proactive processes for identifying feedback from the community and enabling accountability, whereby individuals are actively made aware of their right to feedback. We therefore welcome the inclusion of ‘Inclusive, equitable and accountable health data governance requires mechanisms through which individuals and communities can report data misuse, make inquiries into health data structures and processes, remove their data from a system, and provide general feedback’.
The importance of multi-sector partnerships is clearly highlighted within THC’s principles, which importantly recognises the need to support meaningful partnerships between national governments, civil society academic institutions, non-governmental organisations, the private sector, and others. We particularly welcome the addition that health data policies ‘should prioritise the interests of individuals and communities that provide data and larger societal interests, especially of public health equity’.
The centrality of the human rights lens throughout Transform Health Coalition’s principles is essential. STOPAIDS, as part of our advocacy for a rights-based approach to digital health, looks forward to supporting the movement to unite various stakeholders around a common vision on health data governance,whereby all parties can use and benefit from health data in the near future, and ensure these principles are translated into action.