FAQ Agreements

Nr

CR

Question

Answer

1

V2

I continue to miss appointments about the business model here. What agreements are made about costs and what is the relationship with, for example, the industry? Can it retrieve free data that umcs have put time and effort into making it fair?

These agreements have not yet been made. To achieve this, this should be included in the plateau planning, after which it can be determined who will work out these agreements and who will adopt them

2

V2

With regard to making FAIR as early as possible: the question is whether every house has the right tooling, knowledge and manpower for this.

Maybe not at the moment. If a data holder cannot make the data FAIR themselves, they can use a node to do so.

3

V2

With regard to generic functions: does that mean that HRI will orchestrate generic functions, also for healthcare? Or just that we are going to do it together with healthcare? Or that it's important to have generic functions that are centrally orchestrated?

The idea is to connect -if possible- to generic functions that already exist in the care process. Health-RI orchestrates in this, so that these generic functions can also be applied outside the care process, such as research, policy and innovation. If new functions are needed, we will look at how they can be set up generically, so that they can also be used elsewhere 

4

V2

Is there a legal retention period for health data?

Yes, see What is the retention and storage period of data and bodily material in the context of scientific research? | Elsi Service Desk (health-ri.nl)

5

V2

Regarding Data-centric approach; separation of data and functionality.

"The goal is to improve data quality and consistency, increasing the reliability and usability of the data. As long as data producers do not facilitate this, this will be a task for the data platforms of the data holders in the Health-RI ecosystem."

Question:

How do you ensure that data producers will facilitate this (better data quality and consistency)? And what role does Health-RI play in this? 

Data providers need unambiguous direction on what needs to be implemented.

This direction could be given by arriving at a nationally supported unity of language and technology.

In future versions of the Wiki, more extensive, well-thought-out solutions will be drawn up.

If we agree on this solution, Health-RI will orchestrate that this will be taken up with the relevant healthcare parties

6

V2

New research results are suitable for multiple use from the start.

Will this also happen for AI models (which are also results)? How are these results made FAIR?

The principle also applies to AI models (after publication). How the AI models are made FAIR will be determined per model.

7

V2

Regarding Unity of Language: This covers the medical content in terms of terminology.

The process side of treatments and the financial/administrative/personnel side does not cover the Unit of Language document.

Indeed, there is also process information that needs to be stored in order for the processes to run smoothly. We will come back to this in a future version.