Transform Health is encouraged by the growing momentum around the need for stronger data governance, including the recently published article “Towards an international data governance framework”. While we welcome these moves, we are also keen to ensure stronger governance for health data specifically, which we feel is more than just a sub-category of data, and merits its own specific governance structures.
Just last week, over 90 organisations signed onto a global letter calling for health data governance to be on the agenda of the 152nd WHO Executive Board meeting in January and the 76th World Health Assembly in May and for a resolution to initiate the development of a global health data governance framework. In less than a week, the number of organisations joining this call has grown to over 120!
We are keen to ensure stronger governance for health data specifically, which we feel is more than just a sub-category of data.
As the Health Data Collaborative (HDC) Stakeholder Representatives Group wrap up their first face-to-face meeting since the COVID-19 pandemic, and as we look ahead to next year’s WHO Executive Board meeting and World Health Assembly, Transform Health would like to set out why we need and what we envisage by a "global health data governance framework":
- First out, we believe that a global health data governance regulatory framework - endorsed by governments through a World Health Assembly resolution - would lead to a much needed set of agreed regulatory standards that countries could adopt into national legislation to ensure the equitable governance of health data.
- Such a framework should be based on a set of norms and standards, which draw on existing duty obligations countries have made to respect, protect and uphold basic rights, as set out in different international treaties such as the ICCPR, ICESCR, CRC, CEDAW, as well as commitments made in the UDHR, the Declaration on the Future of the Internet and other ICT norms and standards.
- While there is a need for a broader data governance framework, the specific sensitivities around health data and its importance in maintaining the health and well being of both individuals and the wider population, justifies a health-specific data governance framework.
- A framework should go beyond a set of technical guidelines or a global compass and instead focus on the regulatory environment to ensure political commitment and the elements necessary to enable legislatures to develop the laws and regulations needed to govern the collection, ownership and use of health data and data for health.
Advocating for stronger health data governance
Advocating for a global health data governance framework remains a key priority for Transform Health . We believe that such a framework would lay the foundation for improved public trust in health data systems where individuals feel protected, respected and in control of their own data while allowing institutions working to protect the health and well being of the population to access and use it for the public good.
Transform Health partners are calling for health data governance to be on the 2023 World Health Assembly agenda
Transform Health partners are calling for:
- Health data governance to be on the agenda of the WHO Executive Board meeting and World Health Assembly and for a resolution to be tabled for the development of a global health data governance framework. Transform Health believes a resolution at the World Health Assembly mandating the WHO to develop a global framework on health data governance would be the most effective way of ensuring we develop a set of global standards on this critical issue.
- A global health data governance framework to be developed through a transparent and inclusive, multistakeholder process, including the meaningful engagement of civil society and communities.
- A global framework to be underpinned by equity and rights-based principles, such as the recently launched health data governance principles and other relevant initiatives, to ensure it prioritises the protection of people, the promotion of health values, and equity. The Principles were developed through a participatory and inclusive multistakeholder process (including private and public sectors, academia and civil society) and have already been endorsed by 130+ organisations . We believe they encapsulate many of the aspects envisioned for the Global Data Compact.
Transform Health is committed to help coordinate the engagement of different stakeholders in the development of a global health data governance framework and to ensure it is socialised and gains broad acceptance across different countries and regions and gets adopted and domesticated into national legislation.
We look forward to collaborating with WHO, governments and partners to help advance this agenda - to strengthen equitable and responsible health data management to ensure it maximises public benefit within and across borders, whilst safeguarding data privacy, ownership, and rights.