Moving along in the digital transformation of health
Transform Health has been working to help address the lack of common regulatory standards on health data governance through our advocacy and influencing work. We have been calling for a global health data governance framework, to harness the potential and manage the risks, of health data sharing within and across borders. Global alignment is important to promote a common understanding of what data governance could and should accomplish, and would support more equitable and responsible health data management, helping to maximise its public value, whilst safeguarding personal privacy, ownership, and security.
actions taken by state and non-state digital health actors to demonstrate support for creating a global health data governance framework.
(May 2021-April 2022)
national decision-makers and partners engaged by Transform Health on health data governance.
(May 2021-April 2022)
global, regional and national partners that have integrated the call for stronger health data governance into their work.
(May 2021-April 2022)
Transform Health and partners developed a set of equity and rights-based Health Data Governance Principles, which were launched on World Health Day, 7 April 2022. The Health Data Governance (HDG) Principles offer a strong vision for health data governance that reaps the public good benefits of health data whilst safeguarding individual rights.
The Principles are applicable to a wide range of stakeholders, including governments, technology companies, donors and other bodies that collect and use health data, as well as organisations advocating for stronger health data governance. They are intended to serve as guiding principles that can be adapted to diverse contexts and stages of readiness across regions. They are also a key step to developing a global health data governance framework that puts human rights and equity at its core.
The Principles were developed following an 18-month inclusive, consultative and bottom-up process that brought together the varied perspectives and expertise of over 200 contributors from more than 130 organisations. Among these were representatives from governments, international organisations, civil society, the private sector, youth organisations, and many others. Totally, through the support of our partners, we organised:
Global and regional workshops across Sub-Saharan Africa; the Middle East and North Africa; South, East, and Central Asia; Latin America and the Caribbean; and Europe, North America, and the Pacific; as well as a specific youth consultation
Engaged to work on developing a set of health data governance principles, to underpin the development of the global regulatory health data governance framework
We successfully launched the Health Data Governance Principles on the 7th of April, 2022, World Health Day. At launch, the Principles were endorsed by nearly 50 organisations. This figure has grown to over 150 organisations, covering a range of geographies and stakeholder groups. This far exceeded our targets of 20 early endorsements (pre-launch) and 50 endorsements by the end of 2022.
The Principles are rapidly growing in support and recognition! Over 60 partners at the national level have incorporated the call for stronger health data governance into their work. We have had over 10 articles published on them, as well as videos from champion stakeholders that can be viewed on the Principles’ Community page. The Ludwig Boltzmann Institute for Digital Health and Prevention published a journal article on applying the HDG Principles, to provide 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.
We are calling on governments to mandate the WHO to lead an inclusive process to develop a global health data governance framework underpinned by the Health Data Governance Principles, for adoption through a World Health Assembly (WHA) resolution. Such a framework would establish an agreement between nations around a set of common standards for the governance of health data, which would guide and inform the development (or strengthening) of national health data governance legislation.
Learning from the successes of the process of developing the HDG Principles, we are calling for a global framework to be developed through an inclusive, multistakeholder process.
Our immediate call is for health data governance, and the need for a global framework, to be discussed at the 76th World Health Assembly in May 2023. We drafted a letter to Dr Tedros and the Chair of the Executive Board, calling for health data governance to be on the agenda of the next WHA. The letter has been signed by over 150 organisations.
Coalition partners have been engaging a number of governments, including through the promotion of a draft WHA resolution to galvanise support for a framework to be developed. These actions have been gaining traction, including a public commitment from the government of Cameroon to support a resolution, during our side event at the 75th World Health Assembly.
Through our engagement around regional and global events (e.g. WHA, G20, UNGA, DHW, regional roundtables), we have increased awareness and support for the issue. At the 75th World Health Assembly in May, we organised an event on “Strengthening the governance of health data”, together with coalition partners FIND, Fondation Botnar, PATH, PharmAccess, PMNCH and UNITE. The event saw the perspectives of varied sectors, followed by responses from government representatives from Nigeria, Tanzania, Kenya and France and closing remarks from the WHO.
Transform Health Indonesia organised a T20 webinar that included calls to G20 governments to endorse the HDG Principles and support the development of a global framework. During UNGA, we published our calls to action in a new article, Unlocking the Power of Data for Health: Will UNGA77 Hold the Key?.
We have seen our messages and recommendations included in key outcome statements and reports, including:
Through our articles, such as ‘Outlining our vision for a global HDG Framework’, Transform Health has established its thought leadership on this issue. We are currently working with the Digital and Data Governance Working Group of the Health Data Collaborative to carry out a landscape analysis of digital and data governance frameworks, tools and standards, to help inform the development of a global health data governance framework.
We have strengthened coalition and partner engagement on health data governance, including aligning partners around a co-created coalition HDG advocacy strategy and a roadmap towards a WHA resolution. To enable our partners to take effective action, we developed the HDG Advocacy and Communications Toolkit – a one-stop shop of resources to support partners as they advocate for stronger governance of health data. We have also set up an HDG Working Group to engage with a broader spectrum of interested partners on the issue and jointly take forward this work.
To complement Transform Health’s thought leadership and government engagement on health data governance, we set up the #MyDataOurHealth mobilisation campaign in East, West and Central Africa. The campaign is focusing on the issue of health data and the way it is regulated, and aims to raise public and political awareness of the issue.
The campaign starts a conversation on the issue of our personal health data, and aims to build public understanding and political demand for the 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.
youth and women-led partners engaged in national campaign activities.
(May 2021-April 2022)
We are building this campaign in conjunction with KANCO and partners in East Africa and with community-based partners in West and Central Africa. In August, we held a strategic planning and capacity-building workshop in Kenya with 10 youth, women and marginalised community-led organisations from Tanzania, Kenya and Uganda to develop the campaign strategy.
We issued a survey on health data governance (in English and French) that will provide us with important information on the public understanding of health data governance and feed into our campaign learnings. The #MyDataOurHealth Communications & Engagement Toolkit serves as a one-stop shop to engage with community-based organisations and partner networks during the campaign.