Human rights-based Health Data Governance Principles
Transform Health, together with partners, is stewarding the co-creation of a set of representative and human rights-based Health Data Governance Principles. The Principles seek to align stakeholders around core tenets of data governance to create an environment where all people and communities can share, use, and benefit from health data.
There are other important principles out there, such as the WHO’s data principles (which provide a framework for data governance for WHO) and their ethical principles for the use of AI for health, the Principles for Digital Development and Digital Investment Principles stewarded by the Digital Impact Alliance, as well as OECD’s Recommendation on Health Data Governance and their Principles on Artificial Intelligence.
However, what is especially distinct about the proposed principles is that they are being developed and driven by civil society. The inclusive and consultative process has brought in diverse perspectives and expertise across geographies, sectors and stakeholders. The principles target governments, developers and other stakeholders that collect health data and can eventually be used as a mechanism to hold them accountable to equity and human rights agendas.
Another key characteristic of the Health Data Governance Principles is that they are grounded in Universal Health Coverage (UHC); take an equity and rights-based approach; and support sustainable and resilient public health systems. They include core principles aimed at protecting people and creating health value, while going beyond this to include forward-looking principles around equitably distributing health benefits, towards delivering UHC.
What is distinct about the proposed principles is that they are being developed and driven by civil society. The inclusive and consultative process has brought in diverse perspectives and expertise across geographies, sectors and stakeholders.
Securing wide endorsement and use of the Principles
At the end of October, Transform Health will launch an open public consultation to gather further inputs on the draft Principles. The consultation will run until the end of Digital Health Week on the 3rd of December. This will allow the Principles to be further refined, supported, and endorsed by an even wider audience. We encourage partners to spread the word wide and far and to carry out their own local consultations to gather insights from diverse stakeholder groups.
The Principles will then be finalised and launched at global and regional events at the beginning of 2022. To encourage wide community ownership, they will be hosted on their own website, together with resources to support stakeholders to use and champion them.
During the workshop, we heard ideas from partners on how we can secure wide endorsement and use of the Principles at global and national levels. A key point was ensuring meaningful engagement and wide dissemination with a diverse range of stakeholders, including civil society and communities; adolescent and youth constituencies; government, policy makers and parliamentarians; regional and sub-regional organisations and networks; global organisations and networks; industry; donors; health care professionals and relevant associations; patient groups; and research institutes/academia. WHO was identified as an important stakeholder to take a leadership role to help secure endorsement, aligning with other work in this area. Communications tools (tailored for different audiences) and other toolkits were flagged as important assets to support implementation, accountability and to track progress.
At the end of October, Transform Health will launch an open public consultation to gather further inputs on the draft Principles.
Working towards a health data governance framework
The Health Data Governance Principles are a critical milestone and contribution towards the development of a global framework for the governance of health data. During the second part of the workshop, we discussed how to advance this agenda together, to support the use of digital technologies and data for global public good.
We heard from external partners – WHO, Health Data Collaborative’s Data and Digital Governance working group, Edison Alliance, and Young Experts: Tech 4 Health – on various initiatives to strengthen health data governance. This was followed by group discussions where participants highlighted the need to secure political commitment for a framework at national and global levels and emphasised the importance of a multistakeholder approach. Important ideas were discussed on whether the process should be government driven (inviting civil society participation) or civil society driven (to put pressure on government), or whether a two-pronged approach could be explored – e.g. high-level (global organisations and governments), as well grassroots level (youth organizations, community health workers, etc). Opportunities to complement WHO’s work should also be explored, including bringing in civil society perspectives.
Participants highlighted the need to secure political commitment for a framework at national and global levels and emphasised the importance of a multistakeholder approach.
Partners also highlighted the need to look at the enabling environment to ensure a framework can thrive (e.g. policy, legislation, regulations), as well as how to consider the role of technology providers and software developers.
Driving this agenda forward together
With the proliferation of digital health, and expansion of data linked to this, the need for stronger health data governance has never been greater. It is crucial that health data governance Principles are adopted by governments. These must also underpin and contribute to the development of a framework to ensure participatory, equitable and efficient health data governance so that all people benefit equally from the use of health data, in support of UHC.
We urge governments to endorse the principles and the development of a framework at the WHO Executive Board meeting in January 2022 and World Health Assembly in May 2022.
We encourage partners and stakeholders to be part of a collaborative effort to help ensure this happens, working closely with governments and the WHO, while also advocating for progress to advance this agenda.