6.4 DIGITAL TRANSFORMATION OF HEALTH
good practices of countries, which could help strengthen approaches across borders.
AN IMMINENT START Given the urgency of the need to strengthen health data governance regulation, it is important that the process to develop a framework starts imminently. Transform Health stands ready to support this process, in particular by facilitating, together with our partners, MATHILDE FORSLUND Mathilde is the founding executive director of Transform Health and leads the Enabling Function of the coalition. She has spent most of her career building partnerships — among civil society, the private sector, international organisations and foundations — and setting up coalitions in digital health and nutrition. She served as the coalition director at World Vision’s One Goal Campaign: Nutrition For Every Child. She is passionate about championing the rights of young people and women on issues such as data/digital rights and inclusion. X-TWITTER @mathildeforslun @Trans4m_Health transformhealthcoalition.org “ We need to find
FOUNDATION FOR PUBLIC TRUST Stronger health data governance is needed to lay the foundation for improved public trust in health data systems and to provide the general public with avenues for redress in case they feel their rights are being violated or their data is being misused. This is why Transform Health is calling for a health data governance framework to build consensus and alignment across countries on minimum common regulatory standards for governing health data. Learning from existing good practices and approaches from countries and building on existing norms, standards and principles, a framework would forge agreement on the necessary and optimal regulation and legislation for the effective and equitable governance of health data. In turn, this would support countries in strengthening their national legislation and regulation and also harmonise and support cross-border data flows, with the needed protections in place. A framework should be developed through an inclusive and consultative process to leverage and reflect the wide perspectives and expertise from across stakeholder groups and experts. Importantly, this process must include civil society so it has a say in how people’s data is being collected and used. A framework should also be informed by equity and rights-based principles and build on existing duty obligations and global standards, as well as learnings from countries. In April 2022, Transform Health published a set of Health Data Governance Principles based on the goals of protecting people, promoting health value and prioritising equity. The principles have now been endorsed by more than 150 organisations and governments and provide a strong foundation for the development of a framework. There is growing political support for this agenda with several governments publicly expressing support for a common health data governance framework, including at this year’s 76th World Health Assembly. More than 150 organisations have also called on the World Health Organization to lead the development of a framework, for subsequent adoption by governments at the next World Health Assembly. This issue is also gaining traction at regional levels. In response to the African Union’s calls for sector-specific data governance, Transform Health is working with the Africa Centres for Disease Control to establish the new Flagship Initiative on Health Data Governance. The initiative will build consensus and legitimacy on an African Common Position on health data governance and provide tools and technical guidance to support national health data governance approaches on the continent.
multi-stakeholder consultations to gather wide insights, expertise and best practices to help inform a framework. As well as pushing for political action to strengthen health data governance, Transform Health is working to raise awareness and mobilise public opinion about health data governance. As part of our MyDataOurHealth campaign, which is driven by community-based organisations, we are engaging individuals on questions of access, control and rights over their health data. We are shifting health data from a technical issue to a personal one by putting individuals in the driving seat and amplifying their stories. Health data lies at the heart of who we are as individuals, as groups and communities, and as a species. This is even more so in a digital age where large parts of our identities
ways to maximise the potential of health data to accelerate progress on universal health coverage and other health goals while also ensuring the right safeguards are in place to protect individuals’ privacy and rights”
are stored and reflected in disparate and composite data sets. How our health (and health-related) data is collected, managed, used, stored and disposed of is not just the business of governments and technology companies – we all should have a say. Through the inclusive co-creation of a global health data governance framework, combined with greater action at country level to give people more control over their health data, we can realise health for all in the digital age. ▪
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Health: A Political Choice – From Fragmentation to Integration
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