Transform Health’s statement ahead of the 154th WHO Executive Board Meeting and 77th World Health Assembly
The importance of health data for decision making, medical innovation, patient care, emergency response, strengthening health systems, and ultimately improved health outcomes, is undeniable. In the digital age and the fast development of Artificial Intelligence, we have even more opportunities to leverage such data. However, in the absence of robust regulatory systems, there are risks of data being exploited or misused, or not used to its full potential to reap potential public benefit. This is why more effective and equitable health data governance regulation is so critical. This would ensure the right safeguards in place to protect data and uphold people’s rights, while also supporting responsible data sharing and improved public trust in health data systems. In fact, it is even argued that AI governance is unattainable without a comprehensive and robust framework of data governance.
While several countries and regions are taking steps to address this, these approaches vary. And while there is no ‘one sizes fits all’ solution due to different country contexts and needs, we believe that there is value in countries and other stakeholders coming together to learn from each other, identify best practices, understand where there are gaps, and build a level of consensus around the necessary and optimal components for national regulations and legislation.
Transform Health and partners are calling for stronger health data governance regulation. Toward this, we are urging governments to develop and endorse a set of minimum components for health data governance regulations. Through their endorsement as part of a World Health Assembly resolution, this would help establish that consensus, alignment and agreement across countries around what is needed. Importantly, they would serve as a resource and benchmark for governments as they strengthen their national approaches, whilst also establishing a level of harmonisation across countries, which is important to facilitate cross-border data sharing with the needed protections in place.
Transform Health, AeHIN, HELINA and RECAINSA have convened a series of multi-stakeholder consultations across regions to support and catalyse the development of a set of minimum components for health data governance regulations. Through this process, we have consulted nearly 500 stakeholders from across 65 countries, including many governments. These gatherings aimed to learn from the current landscape, identify good practices and gaps, and solicit inputs from stakeholders, to inform an initial draft set of minimum components. Further consultations are planned for March-April on a draft, to solicit input, validation and build consensus.
Government leadership to take this forward is critical. We have seen growing government support, including at last year’s World Health Assembly with several Ministries of Health co-hosting and speaking at a high-level session around the need for action, in addition to governments writing to WHO on this, endorsing the Health Data Governance Principles, and playing an active role in the consultations. We applaud these governments and urge continued and further leadership as we look towards the 154th WHO Executive Board meeting in January and at the 77th World Health Assembly in May 2024. We call on governments to champion this critical issue by:
- Prioritising health data governance and expressing support for the development and endorsement of a set of minimum components for health data governance regulations during official proceedings (individually and as part of your regional group).
- Sponsoring a resolution on the minimum components at the World Health Assembly, including tabling this at the WHO Executive Board meeting.
- Participating in consultations around the minimum components (March-April), including supporting a Member State consultation and a side event at the World Health Assembly.
- Endorsing the health data governance principles, which provide a foundation for the minimum components and stronger regulation.
Transform Health and partners stand ready to support governments on the path towards stronger health data governance systems and looks forward to political leadership to ensure this happens.