Denmark Has the Best Health Data in the World, We Just Have a Hard Time Using It
Over the past five decades, the massive dataset collected by the Danish healthcare system has become extremely valuable. But researchers, companies, and clinicians require an easier entrypoint to access data for patients and society at large to reap its benefits.
Currently, there are too few radiologists in Danish hospitals and the number of routine X-rays conducted is growing steadily. While scans are being outsourced to radiologists in other countries for analysis, patients are left waiting for an answer.
In an effort to fill this gap and improve health outcomes, the Danish start-up Radiobotics is helping hospitals by training computer software to analyse and prioritise the X-rays before doctors review them. This enables doctors to focus on high-value activities, ensures higher accuracy, and, in the end, saves patients from waiting unnecessarily long to receive their diagnoses.
There is an enormous need to build a system as transparent as possible, so citizens and patients are informed and confident about how their data is being used and how it is being protected
Gaining access to the “right” data has been crucial for the company to train the software”s algorithms. According to Henning Langberg, director of the Data Saves Lives initiative and professor at the University of Copenhagen, this has been possible thanks to Denmark”s unique healthcare data:
“In Denmark, we have digitised scans and X-rays for the past 20 years. This has created a unique data bank, which isn”t currently being exploited. Radiobotics saw the opportunity to create a tool based on artificial intelligence and used the data as a basis for training the algorithm”.
Radiobotics showcases how Danish data can be refined into a new tool that has global potential. And this is just one of the health data projects that is being supported by the Data Saves Lives initiative, which aims to promote the use of Danish healthcare data for the benefit of researchers, companies, and patients alike.
Oversight is required
The Danish healthcare system holds a wealth of valuable data that is stored in more than 160 registries. According to Langberg, the healthcare system collects data about every citizen in Denmark from the cradle to the grave:
“We have done so since the introduction of CPR numbers 50 years ago. Everyone is included – rich and poor, sick and healthy – which makes the dataset unique and gives it the potential to develop novel solutions”.
But to unleash that potential, the data must be used, connected, and refined rather than scattered in siloes and registries across different public entities. That’s why the first challenge Data Saves Lives is trying to resolve is making the data coherent and accessible. They are doing this through a private-public partnership between 30 stakeholders, including Rigshospitalet, Novo Nordisk, and the University of Copenhagen.
In describing their methodical process, Langberg claims they “have made a data-map with an overview of the many Danish health data registres where researchers, clinicians, and stakeholders can search across all registres to see which variables are available and where they are located. Before getting access to the actual data, the researchers still have to apply to each registry, but in parallel, we’re suggesting a new public service concept where stakeholders only have to apply to one place for access”.
Easy access is key
Data-driven transformations are all-encompassing – spanning the pharmaceutical industry, tech companies, the start-up environment, and research departments. Although Denmark possess all the criteria to stand at the forefront of this growing industry, without access to data the opportunity might be missed.
From Langberg’s perspective; “It is complicated and takes a lot of time to get approval and access to data – which limits the possibilities to create the new solutions we need. Collaboration between public and private partners is needed to make it faster and more seamless to develop and implement these new solutions across the healthcare system”.
Today, a lot of data is being collected without ever being used to benefit patients. The technology to use the data in a more sophisticated way is already there, it just needs to be harnessed: “We have to solve this in order to make a better healthcare system in Denmark, but also because it can become an export product which other countries will benefit from”, Langberg explains.
Greater access to and use of data holds the promise of attracting more companies and industries to Denmark. That being said, Langberg is careful to point out that Danish health data will never be “for sale” to either foreign companies or governments. Of course, there will be a balancing act between giving access to data while securing privacy and safety for Danish patients and citizens.
In Langberg’s words: “There is an enormous need to build a system as transparent as possible, so citizens and patients are informed and confident about how their data is being used and how it is being protected. Hopefully Danes will be proud if their data is being used to help other patients and to build novel, life-changing solutions”.
To succeed with this agenda, private-public partnerships need to be formed and this is exactly what the team behind Data Save Lives is trying to do. After all, this is something that we have a long cultural tradition of in Denmark.
Concluding, Langberg shares: “The approach we have to data in Denmark means that most citizens feel confident that their data is being collected for a good reason. The way we handle and use data has the potential to be used by other countries as a new standard for how it’s done – as an alternative to the American or Chinese way. And we have to see that as a huge export opportunity”.