Jens Winther Jensen: Health Data Is A Tool, Not A Product

Future uses of health data open up for some exciting new opportunities. To discuss what they may be, how to implement them, how to address challenges to arise on this journey, Leo Petersen-Khmelnitski talks with Jens Winther Jensen, CEO of the Danish Clinical Quality Programme, an agency that manages 85 clinical databases with health related, mostly clinical data.

Leo: Good morning, Jens! In your view, how did the approaches to ensure the quality of data change in the last five years of your work with the Programme?

Jens: First of all, the quality of healthcare data in Denmark is extremely high, compared to many other situations around the world. We live in Denmark with a tradition of registries, that goes way back in time. We have a general trust in the public for government to setup registries to support the development of the healthcare sector and other sectors in Denmark, this tradition for healthcare registries gives us a place in the front seat for health data quality around the world. When I talk to an international audience, I mention always, that Denmark is a small nation, now we are around 5,6 million people, and compared to other healthcare databases around the world, it is a very small number.

In health data claims, in the United States, for example, the number of entries is measured in tens of millions, but usually they don’t go back more than 2-3 years, in general. Here we are very strong, because the data in Denmark has a very long history. Hence, we can study our population from birth to death, it is doable with a unique identifier, a social security number. Another advantage is that our data covers the whole population. Our data covers all social groups, all income groups, people living in rural areas and in town areas. It has been described that the situation with data in Denmark, and a couple of other Nordic countries, is an epidemiologist’s dream, because you can make these studies on the whole population.

That’s the basis where we come from, so when we look at the time span of five to ten years in Denmark, there is a couple of big things that have been developing. One is the National Health Data Programme run by the National Health Data Authority who have installed the Patient Central Data Registry. We are still learning that registry, but it has some very clear goals. Registering diagnosis and procedures and other information relevant to the patient journey. We are still trying to figure out how to use it in a good way, and it has been a huge task for databases, but also for the whole data landscape, to setup our system to work with it, but we have advanced quite far in this development. Also, now we have national databases for medicines used in hospitals, we have prescription medicines in another database, we have the national laboratories database. We are now generally moving to the place where we collect these things in central registries.

The Clinical Quality Registries are use these data sources instead of having clinicians putting in data directly into our databases. We can re-use the data from these data sources, and thus make it less burdensome to do the registration at clinical data bases. This is one major development on the national scale. There is also the huge genome project on the way. But another thing that has happened relates to electronic health records. There has been consolidation within the regional authorities. In the near future, there will be only two electronic health records. You may argue that there should be only one. But coming from a place where there are five to ten various electronic health records, as it was only a few years ago, it is a huge advancement.

Leo: You think that for electronic health records the future is centralization?

Jens: No, actually not. We are working with both systems. But it makes possible our integration, also it ensures interoperability, using data back and forth. Integration is a lot easier with only two systems.

Leo: What you are describing is a kind of a dream.

Jens: You could say that.

Leo: Any challenges in this dream?

Jens: Well, the main challenge is that the appetite to use data is getting bigger and bigger with the opportunities. These systems only work together now because we make them work together, not because they were not built to work together. We are coming from a place where we were satisfied with a central registry giving us the data to a place where we can use pretty much any sort of data registered in and around the system to make better quality research, obviously within the framework of security and respect for the individual. But making this work is a huge task. You asked if the future of electronic health records is centralization. Well, it is the near future in Denmark. I am not an expert in huge IT systems, but I see a trend of moving from huge monolithic systems to systems that are more integrated, to different systems working together. And I especially think that not only the IT side of EHRs, but also the purpose side must change. The current setup is that EHRs, in Denmark at least, has been very focused on clinical documentation and the support of the clinical work, in terms of effectiveness and the documentation of what has been going on.

Leo: And what will change?

Jens: I think the change will be, that we will have equal goals in terms of quality development and in terms of supporting research, in the future. And why do I think this? First of all, there is a technical opportunity now. It is not a technical dream. What is lacking here is prioritization, will and money, of course. It isn’t cheap. But the driving factors here, the big questions that everybody would like to ask these days, is how to ensure that every patient will get the right treatment. We can use digitalization to help us in that respect.

Another thing that is coming up in our agenda is the lack of human resources. If we have enough money, do we have the people to do the stuff? Therefore, it becomes very important that we only use doctors and nurses who work in the system in a way that creates value for the system. Quality development and the general tools that we employ to move us up the ladder must make more value to the patient. We need to bring the patient’s perspective to the system, and into the quality development system as well.

Leo: What you describe surely will require an enormous effort in interoperability. I would like to pose a couple of questions on this area. Jakob Uffelman, CEO of Sundhed.dk, the main Danish public health portal, has recently commented that interoperability is a bit like happiness, it is never an endgame. You are managing 85 databases with health-related data. Will you agree with him, and why?

Jens: It is a nice saying. I do not envision a total interoperability system to be built. We do not aim to cover every area of standardization and interoperability. That is such a huge task, starting on that journey may kill you in the start. And it has been tried in various aspects already. What we see now is the appetite to be building inside out. For example, we have a database for acute coronary syndrome, we would very much like to integrate it into the EHR system. It gains functionalities of a decision support system to physicians because we ask them to do the scale that divides patients into different treatment categories. We can then use it to implement interoperability. We will also include it into the next thing that we are building. This is the way it is done at the moment. Then we look at what they do at the Health Data Authority, we look at other areas, and learn from there. Hopefully they will start applying this approach more on the national level. Denmark has a huge advantage here, compared to other big countries. It is our size. When you have just 5,6 million people in the country, the people who work in the healthcare IT, people who work with interoperability, we all know each other. It is kind of the same group of people, connected in a kind of network. And that gives us the possibility to be on the same page here, to prioritise rightly. If we starting to push this agenda even further, everybody will start moving in this direction. That is our advantage, instead of having to build a sort of national programme and try to convince people in which direction they should go. Such approach is also of interest here in Denmark, but the fact that you have a little but still knowledge of people involved is making it a lot easier.