Stricter public guarantees demanded for digital health data

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Countries must strengthen public guarantees on the use of digital health data to avoid growing inequalities in medical outcomes and potential human rights violations, a panel of leading independent experts has warned.

Governments should improve transparency and accountability in the use of artificial intelligence in healthcare, create new institutions to oversee health information collected by tech companies, and foster ‘data solidarity’ to balance the commercial and public benefits, they said.

The recommendations were produced by the Lancet and Financial Times Commission on the Governance of the Future of Health Care, which brought together 19 specialists from 14 countries to review recent trends. They consulted widely, including with youth groups around the world.

This report must be a wake-up call for countries to review their approach to digital health, ”said Ilona Kickbusch of the Graduate Institute of International and Development Studies in Geneva, co-chair of the Commission. The report describes “a roadmap that governments and companies can use to put in place essential regulation and governance that will translate into a healthier and fairer future for all,” she added.

The research, published in the Lancet medical journal, listed many benefits of the growth of digital health, including improved access through telemedicine, more personalized care, and new ways for people to track and improve their own health.

However, he highlighted concerns about the abuses that have been exacerbated by the Covid-19 pandemic – including sharing public health data with private companies for commercial purposes, stepping up surveillance and the risks that opaque algorithms can discriminate certain groups.

According to the commission: “The current dynamics of data mining increase the risk of concentrating economic and political power in the hands of the companies that hold the greatest amount of data and the technical capacity to extract value from it, or – in more states – centered models – in the hands of government authorities and bureaucracies. ”

Its report argues that governments should “limit the massive data mining practices of powerful private sector players through stricter competition and data protection policies” and impose “fair taxation” on the Internet economy. .

It offers new mechanisms to better understand and manage the increasing volumes of data collected from electronic health records, fitness trackers and online searches, to give more control to individuals while encouraging sharing for the purposes of medical research in the public interest.

He praised models, including the Swedish approach to electronic health records, which allows citizens to view their medical data and see who else has accessed it; as well as Health Data Research UK, which coordinates the health information made available to researchers; and the new International Digital Health and AI Research Collaborative for Low- and Middle-Income Countries.

It highlights the benefits of innovative legal structures such as “data trusts” which independently govern the collection, management and sharing of data, and data cooperatives which allow individuals to pool health data while at the same time. keeping control over their use. It calls for international interoperability standards so that health data can be shared more effectively across borders.

The Commission recommends that governments impose stricter regulatory measures to protect children and young people from harm online, introduce digital literacy training and invest in digital infrastructure to improve equitable access.

The report identifies a significant “digital divide”, with more than 2 billion people under the age of 26 not connected to the Internet, especially in low-income countries, and women having much less access than men.

In an accompanying editorial, The Lancet identified a “need to reclaim digital technologies for the good of societies” and argued for “a fundamental redistribution of power and agency, achievable only through proper governance”.

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