2023 Annual Report
Transform Health strongly believes in the need to strengthen the governance of health data through more robust, effective and equitable legislation and regulation to fully harness the potential of health data for public benefit and improved health outcomes, while also managing risks, protecting individual rights, and ensuring people’s data is protected from misuse. While several countries and regions are taking steps to address this, approaches vary. Transform Health believes that by countries and other stakeholders coming together to develop and endorse a global health data governance framework, this provides an opportunity to learn from and build on experiences and good practices, and establish a level of consensus around the essential areas that should be addressed through national legislation and regulation. Transform Health and partners urge governments to endorse a global health data governance framework (containing a model law on health data governance) through a World Health Assembly resolution (as well as regionally through relevant mechanisms), and for it to be implemented through national legislation and regulation. This should be underpinned by the Health Data Governance Principles, among other national, regional and international instruments and good practice. This would help build consensus across countries around core areas that should be addressed through national legislation; serve as a resource for countries to strengthen national approaches; and support a level of harmonisation across countries, which is important to facilitate cross-border data sharing.
In 2023 we have worked with partners across different countries and regions to call on governments to endorse the Health Data Governance Principles and to support the development and endorsement of a global framework through a World Health Assembly resolution.
Actions taken by state and non-state digital health actors to demonstrate support for creating a global health data governance framework.
National and regional decision-makers and partners engaged by Transform Health on health data governance.
Global, regional and national partners that have integrated the call for stronger health data governance into their work.
The Health Data Governance Principles, launched in April, 2022, continue to grow in recognition. They have been endorsed by more than 150 organisations working at global, regional and national levels and representing a wide range of constituencies, including multilateral organisations, international and national non-governmental organisations, foundations, academia and research institutes, private sector, and professional associations. The Principles have also been endorsed by three governments – Cameroon, Sri Lanka and the Philippines. The Principles are increasingly being used, including to assess national health data governance landscapes (for example in Kenya and Sri Lanka); to inform the development of the national health data governance framework in Kenya; and to develop a guiding framework for low- and middle-income countries (LMICs) to create a comprehensive mHealth data governance strategy. The World Bank also featured the Principles in their knowledge exchange series and included the Principles as one of the global digital health milestones in the last 10 years, in their new “DIGITAL-IN-HEALTH: Unlocking the Value for Everyone” report.
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Direct Transform Health engagements in global and regional policy processes around health data governance.
Transform Health and partners have been building political will for the development and endorsement of a global health data governance framework. Transform Health’s engagement with governments led to strong support and commitments made during our side event at the 76th World Health Assembly (WHA76), which was co-hosted by the Ministries of Health of Cameroon, India, Maldives, Philippines and Sri Lanka. The event included speakers from the Ministries of Health of Costa Rica, Indonesia, Tanzania and Zanzibar, as well from WHO’s Assistant Director-General for Data, Analytics and Delivery, Dr Samira Asma, and Africa CDC’s Chief Digital Adviser, Jean-Philbert Nsengimana. Transform Health has been working with partners to ensure health data governance is integrated into relevant health related agendas. Our global Call to Action letter that was signed by more than 150 organisations were delivered to Member States through a Non-State Actor statement during official proceedings of the WHO Executive Board. We also developed a key messaging and digital outreach toolkit to support partners in conducting advocacy on our key agendas, in the lead up and during WHA76.
Transform Health’s side-event during #WHA76, “Towards a global health data governance framework”
We worked closely with the Health Data Collaborative (HDC), as an active member of their Data and Digital Governance working group, as well as with the Secretariat around the planning and execution of the “Better Data for Better Health” event in May 2023, where we participated in several panels and proposed a way forward on health data governance towards a global framework.
Transform Health and partners are also catalysing and supporting the development of a model law on health data governance, which could inform a global framework. Working with our regional partners – Asia eHealth Information Network (AeHIN), Pan Africa Health Informatics Association (HELINA) and RECAINSA – we convened seven multi-stakeholder consultations which consulted nearly 500 stakeholders from across 65 countries to learn from experiences and gather insights and perspectives on what is needed to strengthen health data governance legislation and regulation, to inform the development of a global framework. Consultations were held in Africa at the Africa HealthTech Summit in Kigali (October) and at the HELINA conference in Cape Town (November); in Asia at the AeHIN General Meeting in Jakarta (November); in Latin America at the RECAINSA Digital Health Forum in Panama City (November). Further inputs were gathered through an online survey and we are planning a number of national landscape reviews to identify good practices and approaches currently employed by countries. We published a blog that sets out our position and the approach we are taking with partners.
Transform Health participating in Health Data Collaborative’s event on, “Better Data For Better Health”
Asia regional consultation on strengthening Health Data Governance; organised by AeHIN, Transform Health’s regional network partner
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Regional and global decision-makers engaged by Transform Health who have publicly recognised the fundamental role of digital technology and data to achieve UHC.
Transform Health launched the MyDataOurHealth campaign across six countries in East Africa (Kenya, Tanzania and Uganda) and West Africa (Benin, Côte d’Ivoire, and Senegal) in January 2023, to raise public and political awareness of the issue of health data governance. The campaign is mobilising 28 youth and community based organisations to start a conversation on the issue of our personal health data, and aims to build public understanding and political demand for more effective governance of health data. At the heart of this campaign is the question of trust, in those collecting and using our health data (including government departments), and in government authorities, to ensure they establish the laws and regulations that will ensure our data is used to keep us healthy – now and in the future.
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Youth and women-led partners engaged in national campaign activities.
An explanatory video setting out what health data governance is and why it is important was issued. We also developed a communications tool kit and key messages to aid partners’ engagement in the campaign. As part of the campaign Transform Health set up the Where’sMyData? action, and invited people to visit their health centres and request their health data. The participants were then encouraged to tell us about their experience. So far over 500 people have taken part, many of them filmed their experiences, which have been used on social media and in videos.
The campaign has achieved remarkable success since its launch, against its three strategic objectives of raising awareness among the general public, media and lawmakers on health data, pressing for more political attention, leadership and action on this issue, and increasing civil society support and engagement.
Campaign partners achieved significant media attention for this issue across both regions, and managed to get coverage.
Through this media coverage the partners were able to put the issue of health data governance firmly on the public and political agenda.
Partners also engaged politicians directly. Omuka Hub recruited 37 Members of Parliament in Tanzania to participate in the My Data Our Health campaign; these MPs are now champions of Digital Health. In Uganda partners held a workshop with 28 policy makers, including 11 Members of Parliament health data governance. KANCO in Kenya held meetings with 11 Members of the National Assembly – Departmental Committee of Health. While in Benin, OneWorld met representatives from the Information Systems Department of the Ministry of Health as well as the project advisor to the Minister of Health to raise the issue of health data governance in the country. In Senegal, the Association National des Jeunes (ANJ) held a Citizens Dialogue on health data governance in Senegal. The Dialogue was attended by 60 people that included the Chief Medical Officer of the Thies region, the Deputy Mayor and a representative from the health development committee, as well as representatives from civil society. These engagements both raised politicians’ and government officials’ awareness of the issue and highlighted the public concern for action.
Civil society workshop organised by a campaign partner to raise awareness on the #MyDataOurHealth campaign and encourage civil society action
At the regional level: Transform Health organised a high-level event on health data governance at the #AHAIC2023 conference in March with representation from the Ministry of Health Rwanda and the Africa CDC. EANNASO has been actively engaging members of the East African Assembly on the issue and promoting a global framework.
My Data Our Health is playing an important role in putting the issue of health data governance on the public and political agenda and ensuring citizens are part of the discussions at national level.
‘Data for Health’ symposium organised by a campaign partner to inspire action for stronger health data governance and a global regulatory framework to achieve greater health equity.
