Principle 2: Data availibility

DATE: 15-11-2024 STATUS: FOR REVIEW

 

Data availability is an important principle for creating a health data infrastructure. This principle builds on the National Vision and Strategy for the health information system of the Ministry of Health, Welfare and Sport, which states:

“Health data must be available for use. Data availability includes having recorded health data available, accessible and usable for the specific information need, with the underlying goal of using it for prevention, care and welfare. This is for the benefit of all forms of (re)use, care process and use case independent, with explicit guarantees for patient safety and privacy.”

It is important to make agreements on the subject of data availability when it comes to reuse for research, policy and innovation, which is what this agreement system focuses on. On the one hand, we are concerned about paradigms, and on the other hand, we must arrive at concrete standards, responsibilities, roles and tasks.

For example, discussions are useful about ownership of data, which does not exist legally, but does exist in the experience of those involved. This has a major impact on data availability.

And when ownership of data does not exist, how do we talk about topics such as control or compensation for making data available? Which stakeholders have which role and responsibility?