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Denmark has the world's best health data - new project wants to use it better

We've heard it many times: Denmark as a nation is sitting on a goldmine of unique health data collected over decades.

The Danish registries have collected data from all patients, at all hospitals and medical clinics, and according to the same standards and definitions. And we have been collecting data for a long time - over many years, so we can go back a long way when we want to look at the development of diseases and their treatment. And in Denmark, we can link data from different registers because we have CPR numbers. For example, this makes it possible to study heredity in diseases because you can see who is related to each other.

Ananalysis from Deloitte has estimated that the Danish state could save between DKK 25 and 45 billion by using data better to, for example, provide insight into the incidence and frequency of diseases over time and the effect of treatments.

And using data in a better and more efficient way is exactly what a new project wants to do. It will use the wealth of data to create a shortcut to personalized medicine, innovative pricing agreements and more clinical research. The failure to make better use of data in the past has been due in part to technical barriers and complex administrative approval procedures, which have meant that gathering and analyzing data quickly and efficiently can be time- and resource-intensive. A new three-year project, OSCAR, will attempt to address this challenge.

One of the initiators of the project is Troels Bierman Mortensen, CEO of DataFair, a company with special expertise in analyzing health data. He is also the project manager for OSCAR.

He expects data to become a key component of the future of healthcare and by combining and analyzing healthcare data more systematically, OSCAR can ensure relevant and effective use of this data in clinical practice.

"First and foremost, it will benefit patients. By basing treatment on a solid foundation of clinical data, healthcare professionals will be significantly better able to understand and analyze complex problems and make robust data-driven decisions. OSCAR can also strengthen healthcare professionals' ability to gain new knowledge and develop their clinical practice," says Troels Bierman Mortensen.

The project will develop a secure platform for encrypted and anonymized Danish health data, which will make it possible to perform aggregated analyses quickly and securely and in full respect of the individual citizen's privacy and rights over their own data.

The analytics can, among other things, provide insights into clinical research, gain new knowledge about personalized medicine and ensure better utilization of outcome-based pricing agreements for medicines based on real-time efficacy data.

In addition to DataFair, the steering group behind the project includes Rigshospitalet, the regional purchasing organization Amgros and the pharmaceutical company Roche, as well as companies with expertise in health economics, statistics, IT and law.

Great expectations at Rigshospitalet

Rigshospitalet has high expectations for OSCAR. The virtual platform can create easier access to integrate historical health data into clinical studies. With this knowledge, a shortcut to personalized medicine can be created, predicts Professor Ulrik Lassen, Head of Clinic at the Department of Oncology, Rigshospitalet.

At the turn of the year, Rigshospitalet started a clinical trial with 2,400 patients with breast or lung cancer.

"Complete data sets are collected with mapping of the patient's genome. In this way, the effect of standard treatment and targeted treatment can be mapped and detailed, and scientific insight and evidence can be found for precisely the type of medicine that can potentially be most beneficial to the patient," says Ulrik Lassen to Innovation Fund Denmark, which has supported the project.

Amgros, which is responsible for supplying public hospitals with medicines, also sees potential in OSCAR because the project can pave the way for new payment models for medicines.

"Amgros has long had a desire to enter into innovative and value-based pricing agreements that reflect the treatment effect of the drugs. With OSCAR, we have the opportunity to develop and test the theories in practice. If they meet our expectations, we can add new pricing models to our toolbox. This can allow for better access to the latest therapies and the best possible health for the money," says Lise Grove, CEO, Amgros.

The total budget of the project is DKK 78.5 million. Innovation Fund Denmark supports OSCAR with DKK 24.5 million, while public and private partners provide the remaining funding for the project. It is expected that OSCAR will continue in the form of a public-private partnership when the three-year project period ends in the fall of 2023.

Participants in the project