Shared Access To Health Data Will Strengthen Research & Development

Danish Health Data has a big impact on the development of new treatments and solutions for future Health Care. However a lot of researchers and companies unfortunately experience difficulties gaining an overview of the available Health Data and has trouble understanding the requirements and processes that are necessary for gaining access to these Health Data. That is the reason why a shared access to health data has been established.

Denmark has a lot of experience collecting information into national health registers, clinical databases and biobanks. Our Health Data is therefore unique and among the best in the world. This allows for plenty of possibilities for valuable research and development of new treatments, products and innovative soluations in Health Care.

Meanwhile researchers and companies struggle gaining an overview of the various health data that is available to them. This has been demonstrated in an analysis of their needs and barriers to entry. The analysis also show that researchers and companies have difficulties understanding the various requirements and processes that are necessary before gaining access to Health Data.

That is the reason why there has been a collaboration between The Ministry of Health and The Regions of Denmark to develop a shared access to data, guidance and application specifically aimed at gaining access to Health Data.

A Shared Access To Health Data For Research

This shared access will contain three different initiatives:

• The Metadata Map – A complete digital overview of Danish Health Data sources and data controlling institutions at a regional and state level. The Metadata Map is being developed in a pilot-trial in 2020-2021.
• The Guidance Function – Better information and quick replies to questions about requirements and processes that are necessary before gaining access to Health Data for research. The Guidance Function is launched as a pilot-trial from Oct. 1 / 2021
• The Application Gateway – A shared digital solution for applications regarding health data research across multiple governing bodies on a regional and state level. The Application Gateway is expected to launch its first version in the first quarter of 2021..

The initiative does not change current regulations that ensure that data regarding the health of Danish citizens is protected. Researchers are still only allowed access to the Health Data that is strictly required to perform research or statistics of significant value to society.

Minister of Health Magnus Heunicke:

“It is vital that we ensure overview and flexible processes for access to Danish Health Data for world class research. It contributes to development of better treatment options and innovative solutions for Danish patients and the overall health of society.”

Minister of Trade and Industry Simon Kollerup:

“Life science-companies play a crucial role in future treatment options. It is therefore important, that we create good environments for these companise and support their work through the Health Care system. With better access to Health Data, the Life science industry will be able to help strengthen the future Health Care system, economy and work place. 

Chairman of The Regions of Denmark Stephanie Lose:

“We have built a shared structure in Denmark that generates both knowledge and data. And when we apply it, we get both better treatments and better prevention of diseases. Individualized Medicine, i.e where cancer treatment is tailor-made to the patients genetics and disease history, is one of the many examples of this type of data providing brand new possibilities.”

The initiative is part of the governments upcoming Life Science strategy, which will have focus on better use of Health Data, Health Care and the Life Science industry itself.

As basis for the development of these solutions, an analysis was conducted in 2019, of researchers and companies needs and barriers of entry, when looking to access public Health Data. This analysis produced various solution models to meet these needs and barriers of entry.  The analysis was conducted by PA Consulting Group and KRING Innovation for The Ministry of Trade and Industry, The Ministry of Health and Digital Hub Denmark.

Read the analysis here: Analyse af virksomheder og forskers behov og barrierer for adgang til offentlige sundhedsdata (In Danish)