Strengthening health data governance
Transform Health recognises the need for
Transform Health has established itself as a global leader on health data governance. At the outset, the coalition recognised the need for a stronger legislative and regulatory environment to enable health systems to maximise the use of data for public benefit purposes while protecting personal privacy and rights. This issue has become more salient with the increased technological capabilities, particularly the advent of Artificial Intelligence (AI).
Transform Health and partners have been calling for a global and a set of regional health data governance frameworks to be agreed and developed by governments. We believe that global and regional frameworks are important to ensure countries reach a consensus, agree on and commit to core areas that should be addressed through legislation that will ensure a level of compatibility in national approaches. This will foster greater legal coherence across jurisdictions, which is important for cross-border data sharing.
Building political support for a global health data governance framework
Transform Health continues to encourage governments to develop and endorse a global health data governance framework through a World Health Assembly resolution, and for the adoption of regional frameworks through regional processes. To support this process we continue to promote the Health Data Governance Principles, which have now been endorsed by more than 170 organisations and governments, including the Ministries of Health of Cameroon, Sri Lanka and the Philippines.
Driving health data governance country leadership and consensus
Ahead of the WHO Executive Board meeting in January (where the agenda of the World Health Assembly is agreed), we published a statement calling for government support for health data governance and during the meeting in Geneva had bilateral meetings with approximately 20 governments to strengthen engagement and build political will on this issue. On behalf of the coalition, PATH (that is in official relations with WHO), delivered a statement during the Executive Board meeting emphasising the need for more robust health data governance, calling on Member States to support a World Health Assembly (WHA) resolution towards this.
During the WHA, in May, we organised a side event on "Stronger Health Data Governance through Country Leadership and Consensus", co-hosted with the Ministries of Health of Cameroon, Indonesia, Maldives, Philippines, Sri Lanka and the Council of Ministers of Health of Central America and Dominican Republic (COMISCA - representing eight Ministries of Health of Central America and Caribbean region), together with OECD, Africa CDC, World Health Organization, the Health Data Collaborative, Fondation Botnar, Asia eHealth Information Network (AeHIN), Pan African Health Informatics Association (HELINA) and RECAINSA. During the event, we presented the Model Law on Health Data Governance that we developed with partners
Transform Health continued to build political support for health data governance at the UN General Assembly in September, where we organised a side event with the World Health Organization, the Health Data Collaborative, OECD, PATH, Partnership for Maternal, Newborn and Child Health (PMNCH), and Young Experts Tech for Health (YET4H) on "Strengthening Health Data Governance in the Digital Age: Leadership, Collaboration, Action", as part of the Science Summit for the UN Sustainable Development Goals (SSUNGA79). The session included a panel on diverse community perspectives. This was followed by a government panel with speakers from Burkina Faso, Kenya and Somalia. This event aimed to build political support to strengthen health data governance, including through supporting a global health data governance framework and stronger national legislation and by implementing the commitments set out in the Global Digital Compact, and the recommendations from the High-level Advisory Body on Artificial Intelligence.
Developing the model law
Model Law on Health Data Governance provides a legislative guide for governments to use (fully or in part) to strengthen national legislative and regulatory frameworks on health data governance.
Transform Health developed an implementation guide to support governments and other stakeholders to use the Model Law and worked with partners and a number of governments to explore the practicalities of using the Model Law to strengthen national legislative frameworks, enabling us to develop test cases, while supporting governments with these efforts. We also developed a health data governance legislative and regulatory assessment tool that can be used by governments and other stakeholders to assess their national frameworks and identify areas that could be strengthened. We are pushing for this Model Law to be used as a resource for the development of a global and regional framework on health data governance.
Engaging legislators to achieve robust national frameworks
Transform Health has also been working with legislators to build support for health data governance. Transform Health co-hosted a parliamentary inquiry during the UNITE Global Summit in October on “Trust, Tech, and Equity: Strengthening Legislative Frameworks to Responsibly Govern Data, AI, and Innovation for Health” where we highlighted the importance of health data governance for digital health, including AI, and emphasised the critical role of parliamentarians in developing more robust legislation.
National and regional engagement on health data governance
Promoting a Regional Framework on Health Data Governance
Transform Health continues to work at the national and regional level to build support for a global framework on health data governance, and to establish regional precedents. In the Africa region Transform Health and HELINA have been co-chairing the Africa Centre for Disease Control (Africa CDC) Flagship Initiative on Health Data Governance as a way to take forward Africa CDC’s Digital Transformation strategy. The Flagship Initiative aims to support governments to strengthen their health data governance, including through the development of a regional framework and a set of tools and technical guidance.
Transform Health and partners from the Flagship Initiative published a joint statement for the African Union (AU) Heads of State meeting setting out our asks for a regional commitment on health data governance
Read statement →
During the Africa HealthTech Summit in October, we co-hosted a session with HELINA and Africa CDC on "Africa Leading the Way: Regional Consensus and Action to Strengthen Health Data Governance". Speakers included the AU Commission Director of Health and Humanitarian Affairs and government representatives from Rwanda and Uganda. This and other sessions contribute to the growing support for a regional framework on health data governance and complements the coalition’s national level engagement.
Transform Health Senegal organised a regional consultation to gather feedback and validate the draft Model Law. Transform Health is working with partners in other regions as well to build up support for a regional framework on health data governance.
Building Support for Health Data Governance at National Level
Transform Health has been advocating for stronger health data governance at the national level by encouraging governments to endorse and use the Health Data Governance Principles, and to adopt the Model Law (or its components) into national legislation.
MyDataOurHealth Campaign
To build awareness and political support for health data governance, Transform Health launched a popular mobilisation campaign called MyDataOurHealth in January 2023.
The campaign pilot, held across East and West Africa, came to an end in October was a great success in achieving its objectives of raising public attention and media coverage, in building awareness among politicians, and in getting civil society involved in supporting wider advocacy efforts.
West Africa performance
- Mobilised more than 1700 youth, women and marginalised community representatives to engage local health representatives, politicians and the media.
- More than 27 stories about the campaign were aired in the media (TV, radio and newspapers).
- 40 MPs participated in workshops and committed to the campaign.
- Over 100 civil society organisations participated in events, received awareness raising training on health data governance and committed to taking action on the issue.
- More than 667,879 people were reached through social media.
East Africa performance
- Partners provided 271 awareness raising trainings to youth, women and marginalised community representatives.
- At least 580 youth women, and marginalised community representatives took part.
- Over 100 civil society organisations participated in events and committed to taking action on the issue.
- 76 journalists received media trainings on health data governance.
- 57 MPs participated in events and committed to taking the issue forward in parliament.
- A total of 6,764,294 people were reached through the media.
Over 28 organisations organised activities, among which was the Where's My Data? action that encourages individuals to go to their health centres and request their electronic health data. Through this action people were able to experience the issue first hand, test the data management system for themselves and understand their rights, and how they are being enacted at the local level. More than 500 people from 17 countries took part. Their experiences were captured in a survey, the results of which have been consolidated in a dashboard.
