Learning from Denmark’s experience with digitalised healthcare

Morten Elbæk Petersen is the CEO of sundhed.dk, a position he has held since the portal was founded in 2003. He also works as an external lecturer and examiner for public health IT masters programmes at Danish universities.

You can also read the German translation of this interview.

Mr Petersen, you’ll be a keynote speaker at the Münster Expert Talks in September. Could you give us a short preview of what you will be talking about at this conference?

I’m actually invited to Germany very often; I even talked to Angela Merkel last year. The very interesting question for me is always: Why is Germany, which is such a rich country at the forefront of technology, asking its little neighbour about digitalisation? The lack of maturity in digitalisation in Germany is not due to technical difficulties. It’s about the culture – it’s about trust and confidence. I will show the data security measures that we take. But I will also talk about the core of the services we deliver and the benefits for the users and the economy of the healthcare system.

Denmark is years ahead of Germany in matters of digitalisation. How did Danish citizens feel about it in the beginning?

When digitalisation came to healthcare in Denmark 15 years ago, there was no debate in public. It was just done. There were surveys, of course, but we acted with a lot of confidence in the public sector. We have that sort of trust in the government in Denmark.
But the general mindset is quite different in Germany. We have to respect the different cultures, and I will also talk about that in my presentation.
I often take part in panel discussions about data safety with the developers from Gematik [author's note: the developers of the 'elektronische Gesundheitskarte' (eGK) in Germany] . They want to know how to eliminate all risk. That is not possible. We have not had any leaks in 15 years, but of course an accident might happen some day. Like in airplane travel, you do your best to take precautions, but you can never guarantee 100% safety.
But my point is: don’t let yourself be frightened by it – because the value from empowering patients to help care for their own health is worth it.

So we will not talk about risks today, but focus on the benefits.

Oh, but you have to ask those questions. Otherwise Germans won’t read this interview!

Let’s talk about patients first: How do they benefit from the digitalisation of medical files?

On a personal level, you have a lot more knowledge about your own healthcare history. Some of the data on our e-health portal is actually from 1977; it is older than digitalisation itself. And of course we have all the current records from hospitals and from medical specialists. You can also communicate with your general practitioner on sundhed.dk to schedule appointments, have e-mail consultations and so on.

Do Danish citizens appreciate the possibilities they have and use sundhed.dk accordingly?

Denmark has 5.8 million inhabitants, and we currently have 1.7 million unique visitors on sundhed.dk every month. Danish citizens use sundhed.dk a lot, and not just to view their medical records. We also have a lot of general medical information on the portal, which is written in an easily comprehensible way. When we look at the top ten features that people use on sundhed.dk, number one is their private database of medical files. Number two is the basic medical handbook for patients. And number three is the advanced medical handbook for healthcare professionals – we have two versions, you see: an abridged one for patients and a more comprehensive one for the professionals. These three features are the core value of the portal.

So the core value of sundhed.dk is that patients take an interest in their own medical knowledge and understanding.

Yes, exactly.

How are all the medical files put together on sundhed.dk?

Hospitals and doctors write the patient records on their own systems. There are a great many different systems; everybody has their own. And then the files go automatically online on sundhed.dk. We show the records in real time, but they are not written or modified on the portal’s user interface. You can only write in the original files in the doctor’s office. That’s the core of the principle.

How does a patient access his or her personal medical file?

As a citizen, you have a personal identification number and an electronic signature. If you want to access your files, you use your electronic signature. This special key is used all over the public and private sector in Denmark. You do your banking with it and your taxes – it’s your library card, anything like that.

Senior citizens sometimes have long and complicated medical histories. Do they use sundhed.dk too?

Absolutely. The fastest rising group of users is over 65 years old. They are the patients; they are the heavy users of the healthcare system. Doctors and nurses also encourage them to go to sundhed.dk to review their files and prepare for their next visit.
Our hospitals are mainly used by elderly people. So sundhed.dk is optimised for this population group. The user experience is very important to us, so we take great care that everything is easy and logical to understand. We have focus groups especially for senior citizens to constantly improve that user experience.

Can you grant access to your personal files to another person so that your partner or an adult child could help you understand the content and the technology?

Yes, that’s a relatively new feature. It’s intended mainly for family members so that you can, for example, help your elderly parents with their medical issues and read up on what the doctor has said. At the doctor’s office, you are very often nervous or in shock and can’t remember what to ask and what was said. Now you can take your time and look it up in your own living room.
And you can be sure that your next doctor will automatically have the same information that you have. That’s very, very important.

Do doctors put everything in their patient’s files online?

The patient can read exactly the same information that other doctors can read. Over the years, doctors have learnt to write the reports in a user-friendly, comprehensible way. Of course we have evaluated that, and the information is really formulated in an understandable way for the patients.

Can nurses and care-givers also upload their documentation to sundhed.dk?

They can, if their hospital system allows it. At a hospital, nurses and doctors work very closely together as a team. Nurses have access to the hospital’s own files. But when you are in the home-care sector, the situation is different. When there is no doctor, a municipal nurse cannot just look into any hospital files. It is a security measure: you have to be a doctor with the patient in treatment in front of you to be allowed to look at the files on sundhed.dk.
We are working on a strategy to have primary carers participate on sundhed.dk too, but we are not there yet.

Does a digitalised health system simplify processes for healthcare professionals in everyday life?

In Denmark, that is no longer a yes or no question. We have a digitalised society, and all the units work together. That’s how it is. Of course it is an advantage that you can see the medical history of a patient you have never met before and treat him or her accordingly. That certainly improves care.
And a digitalised system makes it a lot easier to change and review your healthcare system in an ongoing process. It is important to do that, to keep pace with new technology, new demographic developments. It’s an evolving system.

Speaking of new technology: Some hospitals already have some sort of digital data flow from technical devices like sensors. If the information goes into the hospital files, would it also go onto sundhed.dk?

Yes. sundhed.dk should be the place where all medical information is collected. This is part of the national strategy. We are not fully there yet, but we have pilot projects to evaluate this sort of input.

What about the health data patients collect themselves, like blood pressure or blood sugar levels? Is there a possibility to share that online with my doctors?

That is one of the challenges we currently face in digitalisation. You see, if you buy a device like a watch that picks up data, then suddenly some of that data goes back to the manufacturer and could be used commercially. And then we cannot provide that safe-harbour feeling that we give with sundhed.dk. The patient’s personal records are kept very secure. We don’t give any data to insurance companies, for example – not even to researchers. They would love to have it, but it’s part of our trust concept that only the patients themselves and their actual doctors can see it.
So in Denmark, we have agreed that we don’t want to have that sort of data in the medical files. But we are trying to make it possible for citizens to fill in such data themselves, because it makes sense. We won’t have it in the main files, but in a separate unit.

What are the next steps you are planning to take with sundhed.dk?

We have some very good pilot projects in telemedicine right now, for example for patients with chronic diseases like COPD or diabetes. In the telemedicine pilots, we are actually working with that kind of user data input. We are also working on a feedback system, where we ask patients about the personal outcome of their treatment and their user experience on sundhed.dk.
All of this digitalisation also has some business aspects, of course. It has proved to be 15% to 20% more effective to work with digitalised processes. But we really do everything on sundhed.dk with the patient in mind.