‘Health data must remain the property of the citizen’

All the medical insights and life-saving procedures we know are based on years of research with patients in front of us. We now have a unique opportunity to greatly accelerate medical research if we use health data in a sensible, safe, and ethical way. Jeroen Maas, Challenge Lead Health at the Amsterdam Economic Board, works with partners from the Amsterdam Coalition on the responsible use of this data and the acceleration of sensible AI applications within the health field.

‘Our starting point is that the health data remains the property of the citizen. The patient must be able to decide what happens to his or her data. And if we analyse medical data in a responsible way, we can get a lot of useful information from it. For example, we know that medications can negatively affect each other. But not every combination is tested beforehand. That would be impossible, with about 5,000 different types of medication on the market. But we also have 17 million people who take these medications and end up at the doctor’s when they experience problems. The data are there; it’s just not accessible.’ ‘With access to this data, we can really start working on prevention. We can look back over fifteen years of health data. That way you can recognise the development of diseases at an early stage and find out what the red flags are. In the case of cancer, for example, this is essential. The sooner you take action, the better the chance of survival. With other diseases as well, the quicker you take action, the quicker the healing will be.’

In order to facilitate this, we need to make data accessible. We are working on this in different ways. We are working with the Amsterdam AI coalition on an integrated health data infrastructure to be able to use the data currently available. But we don’t just want health data to be used safely and reliably, we want it to be possible for everyone in all sectors. With a growing team of partners, including Surf, UvA, AMS-IX, AUAS, Dexes, and the City of Amsterdam, we are also working on AMdEX – a digital marketplace for data.

‘In the future, as the patient, I must be able to decide what happens to my data’

‘Exchanging data over the internet can be a tricky business. Data easily ends up in the hands of a third party and then you no longer have any insight into what happens to it, or how often your data is resold. The idea behind AMdEX is that you make agreements as transmitter and receiver of data, about what may happen with the data. Together with the other party, you determine the rules and they are then technically enforced.’

‘Public transport or aircraft maintenance data, for example, is also very sensitive. Sharing public transport data is useful to offer customised public transport. But you don’t want everyone to know where you are at what time. Maintenance data of aircraft engines is very competitive but contributes to flight safety. With AMdEX, we are looking at how we can technically design it in such a way that KLM and other airlines can make use of each other’s data analysis results, without ever being able to see each other’s data or algorithms.’ We are working towards a future in which we use data ethically, and in which the owner – be it a patient or KLM – always retains control over what happens to the data.

AI technology for people

Last year seven Amsterdam knowledge institutes, together with the City of Amsterdam and the Amsterdam Economic Board announced a joint initiative to invest 1 billion euros in the development of responsible AI technologies over the coming ten years. Known as AI technology for people, this partnership focuses on creating research programmes, attracting world-class researchers and equipping students with the latest knowledge of AI in the domains of business, health and citizens.

AI technology for people is a collaborative partnership between the Amsterdam Economic Board, Amsterdam UMC, Antoni van Leeuwenhoek/Netherlands Cancer Institute, Centrum Wiskunde & Informatica, the City of Amsterdam, Amsterdam University of Applied Sciences, Sanquin, University of Amsterdam and Vrije Universiteit Amsterdam.

This interview was published in the NewScientist special AI Technoloy for people, Autumn 2020

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This contributes to the development of the Amsterdam Metropolitan Area as the European Life Sciences & Health hub