A one-stop-portal is being built to serve scientists with an overview of and easier access to the Danes’ health data. It is led by Danish Regions, an umbrella organisation of the five Danish regions in charge of all hospitals. Here’s an interview with Executive Vice President in Health Politics at Danish Regions, Erik Jylling.
Will this be a platform, where you collect and keep all health data in one place?
No, we won’t do that, because of security reasons. All data remain where they are. This is first and foremost a data map to all the sources you can find in Denmark regarding health data. Then, it is also a new and easier entrance, where scientists can apply for ethical approvals (videnskabetiske godkendelser, se https://www.nvk.dk/). Today there are three different entrances to apply for health data for scientific purposes. It is too cumbersome and time consuming. Finally we are also aligning the rules for every region.
What data do you mean – patient data?
Yes, all data regulated by the Danish Health Care Act
But patients’ health data are mainly collected for treatment, right, and thus not usable for science?
Yes, patient treatment is the main driver here. But science is important, and I don’t see treatment and science as each other’s opposite. It is artificial to distinguish between the two. But of course, there is a difference in the way the law regulates treatment and science.
Will you then become both data controller and data processor with this?
No, the five regions are data processors. We only do this so doctors and scientists, who are often the same person, get an overview and easier access. It won’t change, what you can do with data today in practice.
Will security be as good as the one in Statistics Denmark, who also serves scientist?
Security in Statistics Denmark is like the Pentagon. If a scientist downloads a population of less than five, you get punished and the system closes down. We can’t have a system like that for doctors, who are treating patients.
You are mainly talking patient data, but for science it is best to be able to enrich data and have more datasets, right?
Yes, of course clinical data will be better, if enriched with e.g. data from wearables or other behavioral data. Some patient groups are doing a lot here, e.g. young diabetic patients, who want to interact with their data and control their diabetes. And of course, we’d like to motivate more patients to collect behavioral data.
Can I as an individual control my own data?
Well, that is the premise of our work. But control is also more future vision, and it has nothing to do with this portal. Today, our society has decided that health data is in the control of the society, but when we talk behavioral data, there is no doubt that GDPR (the General Data Protection Regulation) counts here, and that you are in control.
Can I opt out of scientific projects in the future (Danes lost that option years ago)
Personally, I believe we will have to always ask for consent. We do have a unique position in Denmark, when it comes to register science – that we can do it without giving people a chance of opting out. But I don’t think it is a sustainable way to do it in the long run. We have to give citizens the right to say no. Yes, it is more work for scientists, but I believe that they can tell about their projects in a way so most citizens will want to join.
Within 1-2 years Erik Jylling believes the one-stop-portal will be launched