'A move towards freedom from digital feudalism'

All over Europe healthcare systems are asking how to make intelligent use of patient data. Far less discussed is the ownership structure of electronic health records. The prevailing model is that countries, regions, health insurers or other players offer such records and ask tech companies to implement them. There is an alternative model, though, a co-operative structure in which citizens are legal owners of their data and decide case-by-case who is allowed to do what. Insights has talked to Professor Ernst Hafen from ETH Zurich about his MIDATA initiative. Can we give European citizens full control of their digital healthcare identity?

By
Philipp
Grätzel von Grätz

Q. How did the MIDATA concept evolve?

It came out of my scientific work. I am a biologist and geneticist by training, and as such I came across the service 23andMe a while ago. This is a spin-off of Google that offers personal genetic analytics for little money. I found that very exciting, and in fact made a Christmas present to my whole family out of it. At some point, the question came up as to whether it is really a good idea that a Google spin-off collects all this data and makes money out of it. Wasn’t there another possibility? We then realised that there are three basic properties of digital personal data: First, it can be copied. Second, the European Data Protection Regulation rules that every individuum has a right to get a copy. And third, the data can be aggregated, and the individual citizen is in fact the best data aggregator, simply because they have access to more personal information than any tech company ever will. This is where the MIDATA concept comes from: It is a model that model that provides the individual citizen with the tools to control their data. 

Q. How does MIDATA do that?

Think of it as a political movement towards self-determination and freedom from digital feudalism. MIDATA is an ecosystem with predominantly national co-operatives, in which citizens are legal owners of their data. Each co-operative possesses a linked and secure IT-infrastructure. The members of the co-operative request copies of their personal data from doctors, hospitals and data companies and collect these data. As co-operative members, the citizens are able to manage and share their personal health data according to their wishes and needs, quite similar to what you do with your financial data day-to-day. It is not health insurers, tech companies, or regional healthcare services that decide what the data are used for any more: The co-operatives themselves can make data available for non-commercial or commercial research. The vision is that the co-operatives provide – and earn money with – different big data scenarios, and that every co-operative member can decide individually on which project to contribute. Full data ownership by the citizen, and co-operative structures to provide the necessary infrastructure, that’s what MIDATA is essentially about.

Q. Is that more than a vision already?

It is. A friend of mine who is a specialist in computer science and cloud computing developed the technical framework, in particular the database structure and the necessary encryption tools. The MIDATA co-operative in Switzerland was then founded in May 2015, and it started with a pilot project in the field of bariatric surgery at University Hospital in Bern. In this project, the surgeons are interested in collecting patient reported outcomes via an app in order to see whether long-term efficacy becomes better when parameters like quality of life, activity, and weight are monitored. The interesting aspect from a MIDATA perspective is that every single patient they asked wanted to contribute. There is really an untapped potential. 

Q. So you are working with individual clinical trials and trial apps at the moment?

For the moment, yes. We offer various building blocks which allow research projects to develop apps that fit their requirements. In the future, it will also be possible to connect external apps for specific services or trials via an interface that the MIDATA co-operative provides. This will be necessary once data goes beyond patient reported outcomes and becomes more specific, like genome data, nutrition data, or data from blood samples. Here, again, is the advantage of having a co-operative structure: In the statutes of the Swiss MIDATA co-operative, it clearly says that in case of third party apps, an ethic committee will evaluate the tool and will only accept it if data is not sold to anyone.

Q. How many trials are running on the MIDATA platform, and what will be your next projects?

We have finished two trials and have another ten running. Our biggest trial so far started in April. It is a citizen science project in collaboration with the University Hospital Zurich that aims to collect real world data from patients with allergic rhinitis. The goal is to integrate symptoms and individual geo-localisation data with meteorological data, pollen data, and other relevant data. We hope that this trial will reach 100,000 individuals.

Q. The MIDATA financing model is about giving commercial research projects access to the resources, provided the individual citizen agrees to share their data. Have you had any experience with this approach?

Until now, our projects and infrastructures have been paid for by individual research grants. The goal is to break-even with the help of commercial projects by the year 2020. In these cases, for example when a pharmaceutical company wanted to make use of our data, MIDATA will negotiate terms and conditions on behalf of the members of the co-operative. I would like to stress, though, that we won’t pay any of our members for making data available. Much like in donating blood, donating data should be done for non-monetary benefits (personal feedback, better health monitoring) and to contribute to research. The money that the co-operatives earn will be used to maintain and extend the platform and to invest in projects from society at large will profit. 

Q. Your ambitious goal is to make MIDATA a Europe-wide movement. Have you had any success with going international already?

We have to go international, in the long run, because our financing model will only work when we manage to reach a critical size. There is considerable interest in a number of countries, so we are optimistic that we will be able to become a pan-European player. We are in the process of founding a German MIDATA co-operative, with Professor Ulrich Dirnagl of the QUEST Center at the Berlin Institute of Health in the driving seat. We have learned that it takes some time to adapt our statutes to different national legislations that regulate co-operatives. But we are close now in Germany, and we should be able to launch the German co-operative in summer. There are also plans to establish a Dutch MIDATA co-operative, driven by the Foundation Mijn Data Once Gezondheid and Leiden University Medical Center, and there is interest in England – at the University of Oxford – and in Belgium. So we are gaining pace. It’s becoming really exciting.   

Q. Is your long-term vision to let MIDATA evolve to become a full electronic health record?

Yes and no. I think, in medicine, our infrastructure will serve as an electronic personal health record. But the MIDATA concept can in fact be applied way beyond healthcare. We can store all kinds of data. I am pretty convinced, for example, that personal educational data could become at least as relevant for a person and for research as personal health data. I can see no reason why we should not store educational data too. Healthcare is an obvious area to start with, but digital self-determination goes way beyond.  

Philipp Grätzel von Grätz

(Germany) specialises in medicine, health policy and, in particular, eHealth and information technology in healthcare. He is one of Europe’s leading journalists in the field and author of the German book Connected Health.

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