Health data and the case for regulation

dr. Ulla Jasper argues that world leaders must act to develop an authoritative framework for managing health data.

Doctor signs papers
Image: Kaspars Grinvalds/Adobe Stock

If the COVID-19 pandemic has taught us anything about the use of digital technologies and artificial intelligence, it is that such technologies can be both a powerful cure and a potentially harmful curse.

We saw that digital tools and AI applications can have a breakthrough impact on public health, disease surveillance, vaccine research and service delivery, to name just a few examples. But we also saw digital or AI technologies being used for surveillance, to monitor populations, to curtail freedom of expression and to undermine access to information.

TO SEE: The COVID-19 Gender Gap: Why Women Are Leaving Their Jobs and How to Get Back to Work (Free PDF) (TechRepublic)

The power of digital technology and AI for sustainable development

Yet we cannot afford to ignore the benefits of technological progress. In fact, research indicates that digital technology and AI can enhance our capabilities to achieve the United Nations’ Sustainable Development Goals by 2030.

The potential is especially huge in the health sector, ranging from improved diagnostics and treatment to more efficient and resource-optimized healthcare management to better medical education and targeted healthcare financing.

With only eight years to go and given that an estimated half of the world’s population still lacks access to primary health care, such progress is urgently needed. This, of course, requires more investment in digitally-enabled health systems and essential health technology.

Overcoming Obstacles

However, another critical obstacle that needs to be addressed to unleash the full potential of digital and AI in healthcare is the lack of a comprehensive framework for global health data governance.

To ensure that digital technology fully contributes to positive health outcomes, we need to address and overcome the underlying conditions of inequality and injustice. We must prevent digital technology from being used to extract data for unethical commercial or surveillance purposes, and we must prevent discrimination against minorities and vulnerable people in insurance schemes.

At the same time, we need to close existing data gaps that disproportionately affect marginalized people, including those of low economic status who lack access to healthcare, or communities where health data is not routinely collected.

As set out in a recently launched report from The Lancet and Financial Times Commission on Governing Health Futures 2030: Growing up in a Digital World, it is vital that health data governance mechanisms are implemented to “simultaneously protect individual rights, promoting the public good potential of such data and building a culture of fairness and fairness in data.”

Principles of Health Data Management

It is against this backdrop that Transform Health, a global coalition working to achieve universal health coverage through the use of digital technology and data, is now taking this call to action a step forward by presenting a comprehensive set of principles for health data management. , the first global set of principles to guide the use of data in health systems.

The eight principles were developed in an inclusive, civil society-led, global consultation process involving more than 200 contributors from more than 130 organizations through global and regional workshops, followed by a public consultation. The process is designed to gather perspectives and expertise and ensure meaningful involvement of diverse stakeholders from different geographies and sectors. Youth involvement was a particular priority for us at Fondation Botnar; we believe that they should be treated as equal partners in the development of policies and practices, especially in the digital and AI sectors.

While the principles capitalize on and build upon existing standards, one of their key distinguishing features is that they provide a strong human rights and justice lens for the use of data within and across health systems. For example, the principles emphasize the need to “ensure that the benefits of data use and data-based health systems are distributed fairly among all groups and populations, regardless of social, economic or political characteristics.” They focus on universalizing the benefits of digitization of healthcare.

Within just four weeks, the principles were endorsed by more than 80 different organizations – from the WHO-hosted Partnership for Maternal, Newborn and Child Health to PATH and FIND, the global alliance for diagnostics.

World leaders must act now

But the principles are only a first step. They represent a critical milestone towards developing an authoritative health data management framework to support the use of digital technologies and data for the global public interest – where all people and communities can share, use and benefit from health data .

At the recent World Health Assembly, we raised this issue and called on world leaders to adopt these principles, which are now also endorsed by the World Bank. We hope that leaders around the world adopt these principles, as such a global framework would enable us to collectively reap the benefits of digital technologies and data for the global public interest and to advance the future health and well-being of people. responsible improvement.

dr. AS Ulla Jasper is the Governance and Policy Lead at Botnar Foundation.

dr. AS Ulla Jasper is the Governance and Policy Lead at Botnar Foundation.

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