Tougher public safeguards urged for digital health data

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

Governments should enhance 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 commercial with public benefits, they said.

The recommendations were produced by the Lancet and Financial Times Commission on Governing Health Futures, which convened 19 specialists from 14 countries to review recent trends. They consulted widely, including with youth groups from around the world.

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

The research, published in the Lancet medical journal, catalogued many benefits from the growth in digital health, including improved access via telemedicine, more personalised care, and new ways for people to track and improve their own health.

However, it highlighted concerns over misuse that have been exacerbated by the Covid-19 pandemic — including the sharing of public health data with private companies for commercial gain, intensifying surveillance, and the risks that opaque algorithms can discriminate against some groups.

According to the commission: “The current dynamics of data extraction are increasing the risk of concentrating economic and political power in the hands of those companies that hold the greatest amount of data and technical capacity to extract value from them, or — in more state-centric models — in the hands of government authorities and bureaucracies.”

Its report argues that governments should “limit the massive data extraction practices of powerful private sector actors through stronger competition and data protection policies” and impose “fair taxation” of the internet economy.

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

It praises models including Sweden’s 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 co-ordinates health information made available to researchers; and the fledgling International Digital Health and AI Research Collaborative for lower and middle income countries.

It points to the benefits of innovative legal structures such as “data trusts” which independently govern the collection, management and sharing of data, and of data co-operatives that allow individuals to pool health data while retaining control over its use. It calls for international standards of interoperability so health data can be shared more effectively across borders.

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

The report identifies a significant “digital divide”, with more than 2bn people aged under 26 years old not connected to the internet, especially in lower-income countries, and women with far 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 appropriate governance”.