Working towards a single medical data infrastructure in Amsterdam

How can we use medical data science to create a healthier Amsterdam Metropolitan Area? In the second of a series of interviews, we spoke with Dr Paul Elbers, an intensivist at Amsterdam UMC and one of the organisers of the monthly Amsterdam Medical Data Science Meetup. Dr. Elbers is dedicated to improving the lives of patients around the world through the development and implementation of medical data science applications.

What are you doing about data sharing at Amsterdam UMC?

Medical data science is an underdeveloped area here at Amsterdam UMC and in medicine in general, and with good reason: the strict privacy laws and latest GDPR regulations. This is a big issue for me, as I am very much in favour of sharing data. The more data is shared, the better machine learning can come up with models to improve patient care. So patient data can be very beneficial to future patients. We’re trying to solve the ethical and moral dilemma of data sharing by providing guidance for European Intensive Care Units to share their data in a responsible way. This work is being done with the European Society of Intensive Care Medicine. To set an example, we have already anonymised our own database, which we plan to release to interested ICUs in the next few months. There are also talks between hospitals in the Amsterdam region about how we can share data.

How does data sharing help you, your patients and your organisation?

Data sharing is essential to make sure that the models being developed are not only applicable to the patients of one hospital, as is the case when models developed in one centre are trained using data from that individual centre. They then must be retrained in another centre. If the data was combined in the first place, then models could be built that have a better and deeper understanding.

How can medical data be shared more successfully?

It’s not being shared now, or at least not on a level anywhere near what I would consider ideal, so I would suggest just doing it. The GDPR is very important for the protection of privacy, but it has complicated things, as patient data is of tremendous moral value to improve the treatment of future patients. I think hospitals are a little too scared about the legal or image implications and don’t take advantage of the huge benefits of using their data. If they were to do that and were encouraged to do it together – as there’s power in numbers here – it would be for the benefit of all. And it is certainly possible do to so legally and responsibly, also in the context of GDPR. I think the best thing that could be done is that society encourages hospitals to share their data for the right causes.

What impact would working with one common medical data infrastructure, across the entire Amsterdam region, have on its healthcare?

Like with any attempt to make data more accessible and interpretable, it would make the life of data scientists easier. It would also make the implementation of machine learning and AI models at the bedside easier if the data infrastructure was the same in hospitals across the region or even the world.

What do you think are the biggest hurdles in the way of realising an integrated data health infrastructure in the Amsterdam region?

The biggest hurdle is that some healthcare institutions in Amsterdam use different systems to others. That is very unlikely to change in the next few years as there are contracts in place. The best thing that could happen is that the CEOs of those institutions talk to each other so that they understand clearly that the data is useless if it is not being used. It would be far more beneficial to put their data in a single repository and provide mappings for those that are interested in using it. There are many people in Amsterdam who would be keen to use that data and would even provide the mappings as a condition for doing so, which would be a win-win situation.

What conditions are needed to realise this one central infrastructure in the Amsterdam Metropolitan Area?

The data needs to be anonymised to be shared, so if hospitals do that, they can share it with whoever they like, and could theoretically share it publicly. How difficult it is to anonymise depends on what type of data it is. The only thing that needs to happen is that the CEOs of a few big medical centres say, “we’re going to make it happen”, and then others would follow suit The investment needed to set that up is small. And doctors would be happy to contribute as they would like to help to make the lives of future patients better if they can.

A healthier Amsterdam Area

This interview is the second part of the series ‘Working together towards a healthier Amsterdam Metropolitan Area’, in which the Amsterdam Economic Board publicises developments in healthcare in the region. You can read part 1 the interview with Board Member Jeroen Tas, Philips here. Our dream is that in 2025, residents of the Amsterdam Area enjoy two more healthy years of life. Therefore, we are focusing on improving health and on preventing disease through smart applications of data science.

Amsterdam Medical Data Science

The Amsterdam Medical Data Science Group meetings are supported by The Right Data Right Now consortium, which includes Amsterdam UMC, OLVG, Vrije Universiteit, Pacmed, and the Amsterdam Economic Board. The Medical Data plus Pizza meeting aims to bridge the gap between health professionals and data scientists by bringing both together in an informal setting for presentations and pizza. At Amsterdam UMC data scientists, medical professionals and researchers discuss how AI (Artificial Intelligence) and medical data can be used to benefit patients and improve medical practices. Since it’s launch in August 2018 it has steadily grown in popularity with more and more people attending to hear the latest news and innovations in medical data and spark new collaborations. For more reports from previous Medical Data plus Pizza Meet-ups, click here.

Do you want to participate?

If you want to contribute ideas and/or contribute to a healthy AMA – or specifically the development of an integrated medical data infrastructure – please contact Jeroen Maas (j.maas@amecboard.com), Challenge Lead Health for the Amsterdam Economic Board. Read more about all our other initiatives on the road to a smart, green and healthy metropolis of the future here.