Authored by Nanjira Sambuli, Vice-President, Transform Health

In this opinion piece, written ahead of the 2022 UN General Assembly, Nanjira Sambuli calls for global leadership to address current gaps in health data governance. She highlights the growing consensus within the UN - and among other global health actors - on the need for stronger data governance. To realise the health benefits of data, Sambuli argues that steps must be taken now to develop a global health data governance framework.

At the UN General Assembly three years ago, world leaders reaffirmed their commitment to extend universal health coverage (UHC) to everyone by 2030. Whilst coverage of essential health services has expanded over the last two decades, on current trends many countries—particularly low and middle income countries (LMICs)—are not on track to achieve UHC goals. The COVID-19 pandemic derailed much of our progress: overwhelming health systems, squeezing government health budgets and pushing more people into poverty.

Innovative approaches are needed to get countries back on track. Fully harnessing digital technologies and data could help LMICs move forwards in providing their populations with essential health services and reducing out-of-pocket payments for health. Digital health technologies, combined with high-quality data, can enhance each of the dimensions of UHC and accelerate health equity by making health systems stronger, more effective and more responsive to the needs of the populations they serve.

Better governance of health data can support progress towards UHC

Digitalisation is high on the agenda for most countries but national governments and international health partners are yet to maximise the benefits of digital technologies and data for health. As the UN Secretary General highlighted in his 2020 Data Strategy, we need to unlock the full power of data for health and other global goods. Improved data governance is one of the priority actions identified in the UNSG’s strategy, as well as in his Roadmap for Digital Cooperation, to maximise the value of data and advance its responsible, human-rights based use.

Governance of health data requires special attention from policymakers, both for its potential to advance UHC and other development goals, but also because this category of data often contains personal and sensitive information. Privacy breaches and misuse of health data can have harmful consequences for individuals and communities including stigma, discrimination, and political or commercial exploitation. This is acknowledged in several UN resolutions, including those on UHC and pandemic preparedness and response, which call for stronger protection of personal data.

Ethical and human rights-based concerns arising from the poorly governed collection and use of health data risk undermining confidence in the benefits and opportunities that digitalisation offers, thereby undermining the potential of data to accelerate progress towards UHC. Since the potential benefits and risks of health data transcend borders, a unified global approach to governance is required. A global health data governance framework is needed to define and establish a global agreement around a set of standards for the necessary regulatory environment to govern health data and to inform national legislation and regulation.

Grounding governance in UHC values

If UHC is one of the main outcomes we seek from data use, it stands to reason that global, regional and national data governance systems should be grounded in UHC values such as equity, solidarity and human rights. Support for such value-driven approaches to health data governance is gaining traction. The Lancet and Financial Times Commission on Governing Health Futures 2030’s report called for “a new approach to the collection and use of health data [that prioritises] protecting individual rights and promotes the public good potential of such data.” In a similar vein, the outcome statement of a WHO Summit in 2021 called for a “common framework and good data governance practices underpinned by a globally unifying set of principles.”

Earlier this year, a set of equity and human rights-based Health Data Governance Principles were developed to align policymakers and other stakeholders around a common goal of equitable health data governance, where all people and communities can share, use and benefit from health data. They were developed through an inclusive, civil society-led process and have now been endorsed by over 115 organisations. The Principles are an important step towards a global health data governance framework but will only have impact when they are taken up by governments and incorporated into policies and practice.

This growing consensus for UHC-centred approaches to data governance must now be translated into political action. Work must begin to design a global framework on health data governance—framed around objectives of protecting people, promoting health value, and prioritising equity. Regretfully, there doesn’t seem to be enough urgency among policymakers to take this issue forward. Data governance is not on the agenda of the UN General Assembly this year. This is a missed opportunity in the lead up to the next World Health Assembly in May 2023.

Leadership needed to advance health data governance

As we stand at the half-way mark towards the SDG deadline, and amidst a rising pool of health data, we need strong leadership to ensure that this data moves us closer to UHC without leaving anyone behind. It is not too late to make 2022 the year where decisive global leadership at UNGA77 set the wheels in motion towards a global health data governance framework.

As part of the evolution of a Global Digital Compact and preparations for next year’s Summit for the Future and High-Level Meeting on UHC, the UN and its Member States should champion this agenda and call on the WHO to lead an inclusive process to develop a health data governance framework based on UHC principles. As the leading normative agency for health, the WHO is best placed to steward a binding agreement between nations that is co-created by all relevant communities, stakeholders, partners and institutions. We need Member States to sponsor a resolution at next year’s World Health Assembly to ensure this happens.

The effective use of data is central to the UN’s ambitions for health and other areas of development. But without bold leadership and commitment, approaches to data governance will not shift fast enough to protect our rights and deliver the health outcomes that we want to see by 2030. At UNGA77, Member States and health leaders must turn the key and unlock the potential of health data. Let’s set to work and build the ambitious, action-oriented, future-looking and tangible health data governance framework that governments, organisations and communities working towards UHC need.

About the author:

Nanjira Sambuli is the Vice-President of Transform Health. She is a researcher, policy analyst and strategist interested in and working on understanding the unfolding, gendered impacts of ICT adoption on governance, diplomacy, media, entrepreneurship and culture. Nanjira is a Fellow in the Technology and International Affairs Program at The Carnegie Endowment for International Peace, and a Ford Global Fellow. She is also a board member at The New Humanitarian, Development Gateway, and Digital Impact Alliance. Additionally, Nanjira sits on the Gender Advisory Board at the UN Commission on Science and Technology for Development (CSTD), advises the Carnegie Council's AI and Equality Initiative and is a diplomacy moderator at GESDA.