The corona crisis revealed a problem few people knew about: while having the highest numbers of internet connections per person and the highest internet speed in Europe, we are still unable to share health data safely, quickly and at scale for better patient care. As a result, we are now looking at involving parties that offer partial solutions. How can we create an network that allows secure data sharing at scale and for specified purposes?
Maastricht UMC + is considering applying Chinese algorithms to quickly diagnose corona patients based on lung photos. And the Chinese are not alone – data scientists from all over the world are offering their expertise to hospitals to help deal with the corona crisis. However, current legislation states that health data should not be shared without the patient’s consent. Exceptions are possible if sharing the data is in the public interest – if it’s for the sake of public health – or when it is in the interest of the patient and they are too ill to give consent, but hospitals are still reluctant to share patient data.
In cases as these privacy and public interest are at odds. The use of data in our daily lives is increasing rapidly and we can be sure that many more situations will follow in which individual, social and economic interests to share data are diametrically opposed. The big question is: how do we create an internet in which we can share data securely, at scale and only for a specified purpose? And how do we facilitate an honest conversation which interest is prioritized? And who gets a seat at the table?
Fair, open and trustworthy data sharing.
In the Amsterdam Area, a group of digital pioneers is working on the development of the Amsterdam Data Exchange (AMdEX). AMdEX focuses on the value of control, from the Tada manifesto. AMdEX is intended to provide control over shared data. Those who submit the data determine the rules for which purposes they may be used and the technique used for this is in the hands of the participants. AMdEX operates in the background, facilitating the requested actions. Think of it as a digital Albert Cuyp Market that ensures that visitors and merchants can exchange data with each other safely and on their own terms.
In the case of corona patients, this would mean that multiple hospitals could securely make their lung data available and then – according to their own conditions – allow multiple AI developers to work on innovative algorithms simultaneously. No individual health data would be visible. The parties do not see each other’s data or algorithms.
It is especially in times of crisis that we notice how dependent we are on technology and that the choices we have made in the past determine the world in which we live today. It is up to governments, academia and businesses to focus on the development of an internet in which control and ownership of data are safeguarded, so that in the future we can avoid having to share data without knowing what the consequences are. We also need this so we can offer entrepreneurs new opportunities to develop digital products and services – opportunities we desperately need to overcome this crisis.
This article was also published on amsterdameconomicboard.com
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