The Hedax Project
With the use of a new IT infrastructure it’s become possible to exchange health data through individualized consent, while still being GDPR compliant, thus giving the user the right over their own health data. This innovation has created a governance structure that secures citizens’ control over the sharing of data that, up until now, haven’t been used in the most efficient way in regards to creating personalized medicine.
Denmark has some of the best registry data in the world and a near complete use of electronic medical
records (EMRs).
The overall aim for the HedaX is to make better use of the Danish health data in combination with patient-generated health-related data for the benefit of the society, business, research and the individual citizens. The HedaX project advances personalized medicine through the use of new health data sources and contributes scientifically in the fields of cancer treatment and bipolar disorder.
The focus has primarily been on applied cryptography, health economics and behavioral economics.
Innovation Fund Denmark has funded the project with 15,8 mio. DKK
Project partners: Secata / Partisia, Data For Good Foundation, DataFair, Alexandra Instituttet, Klinisk Epidemiologisk Afdeling Århus Universitet, Region Hovedstaden, Kræftens bekæmpelse, H.Lundbeck, Monsenso and DPO Management. The project ended in December 2022.
The most important results are:
Development of the Data For Good Platform for sharing data.
See link to website:
https://dataforgoodfoundation.com/#hvad
Development of the Virtual Public Registers Platform (VPR Platform):
https://partisia.com/better-data-solutions/virtual-public-registers/
The VPR solution has been security tested by PwC with the second highest possible security score. PwC estimates that the solution, when it is in operation at Statistics Denmark and the Danish Health Data Agency, will be able to achieve the assessment 'very secure', which has not previously been given by PwC to an IT solution.
The VPR solution has been tested with the coordination of test data between Statistics Denmark and the Danish Health Data Agency with positive results.
The project has gained experience on how to collect personal data in different ways. The Monsenso solution has been used to collect data from multiple sclerosis patients in collaboration with the Multiple Sclerosis Association. The Data for Good Platform has been used to collect data from cancer patients. A report for recommendations for the most effective models for collecting data has been made.
The HedaX project has been made the foundation for OSCAR and HedaX activities are continued in the OSCAR project where the business plan, products and services for the VPR solution will be made. See: https://www.oscar-project.com/
The HedaX project, together with the OSCAR project, has been invited to provide input for a forthcoming
Service review of the health laws, with a view to ensuring better access to Danish health data. The project has greatly contributed to gaining knowledge about the challenges with collecting Danish health data and technologies have been developed that form the foundation for it to be much easier to gain insight into Danish health data in the future, which will be beneficial when new treatments must be developed and prioritized, which ultimately ensure better treatment for citizens.
For more information contact Troels Bierman Mortensen at tbm@datafair.org or: +45 31 55 10 15 
