Health data and the case for regulation

Dr. Ulla Jasper argues that world leaders must act to develop an authoritative framework for the governance of health data.

Doctor signing 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’s that such technologies can both be a powerful cure and a potentially harmful curse.

We saw that digital tools and AI applications could have a game changing impact on public health, disease surveillance, vaccine research and service delivery, to name just some examples. But we also observed that digitally or AI-enabled technologies were used for surveillance, to monitor populations, curtail freedom of expression and undermine access to information.

SEE: The COVID-19 gender gap: Why women are leaving their jobs and how to get them back to work (free PDF) (TechRepublic)

The power of digital technology and AI for sustainable development

Yet we cannot afford to forego the benefits of technological progress. In fact, research indicates that digital technology and AI can boost our capacities toward realizing the United Nations’ Sustainable Development Goals by 2030.

The potential is especially enormous in the health sector and ranges from improved diagnostics and treatment to more efficient and resource-optimized healthcare management to better medical training and targeted health financing.

With only eight years to go, and given that an estimated half of the world’s population still does not have access to primary health care, such progress is urgently needed. This of course requires increased investments in digitally-enabled health systems and essential health-technology.

Overcoming obstacles

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

For digital technology to fully contribute to positive health outcomes, we must address and overcome 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 it from discriminating against minorities and vulnerable people in insurance schemes.

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

As outlined in a recently launched report by 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 for “simultaneously protecting individual rights, promoting the public good potential of such data and building a culture of data justice and equity.”

Health Data Governance Principles

It is against this backdrop that Transform Health, a global coalition working on achieving universal health coverage through the use of digital technology and data, is now taking this call to action one step forward by presenting a comprehensive set of Health Data Governance Principles, 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-driven, global consultation process involving more than 200 contributors from over 130 organizations through global and regional workshops, followed by an open public consultation. The process was designed to gather perspectives and expertise and ensure meaningful engagement of diverse stakeholders from across geographies and sectors. The involvement of young people was an especially key priority for us at Fondation Botnar; we believe that they must be treated as equal partners in the development of policies and practices, particularly in the digital and AI sectors.

While the principles speak to and build on existing norms, one of their key distinguishing features is that they bring a strong human rights and equity lens to the use of data within and across health systems. For example, the principles stress the need to “ensure that the benefit of data use and data-based health systems is equitably shared across all groups and populations, regardless of social, economic or political characteristics.” They thereby focus on universalizing the benefits of health digitalization.

Within only four weeks, the principles were endorsed by more than 80 diverse 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 are a critical milestone towards the development of an authoritative framework for the governance of health data to support the use of digital technologies and data for global public good – where all people and communities can share, use and benefit from health data.

At the recent World Health Assembly, we brought attention to this issue and called on world leaders to adopt these principles that have now also been endorsed by the World Bank. We hope that leaders around the globe 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 good and to improve people’s future health and wellbeing in a responsible way.

Dr. Ulla Jasper is the governance and policy lead at Fondation Botnar.

Dr. Ulla Jasper is the governance and policy lead at Fondation Botnar.

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