FAQ Acceptance

Nr 

CR

Question 

Answer

1

V2

I am a citizen who wants to participate. How is the citizen's perspective taken into account?

We have a social advisory council in which citizens and patients are represented who contribute ideas about the realisation of the health data infrastructure. We are also looking at involvement of a wider audience through, for example, pharos and the organisation of citizens' assemblies. Input can always be sent by e-mail, which allows us to include gegevensverbeterenlevens.nl this input  via an FAQ on the future website.

We are working closely with the Patient Federation and the Ministry of Health, Welfare and Sport on communication on this subject so that it is understandable for the entire population.

2

V2

Those you don't "know", or are in coalition of the willing, are the ones where the most resistance can be expected. How do you get there?

We have set conditions for the information we will disseminate via the website, such as B1 language level, short animations, videos and FAQs. We respond to questions that come from the focus group in order to include concerns and wishes in the content to be developed. This is widely taken up (in close cooperation, e.g. also with the Ministry of Health, Welfare and Sport) and is not only the responsibility of Health-RI.

3

V2

In the EHDS, control over genomics seems to be available via opt-in. How do we deal with that? Is this linked to a control register and can it be queried live?

The diversity of control procedures (within the EDHS) underlines the importance of a central place where we can record these control choices: a national control register. The registry must be able to support all these variations. Furthermore, one of the technical conditions of a control register is that the register is always up to date and can be consulted by anyone who needs to check the recorded choice of control.

4

V2

Regarding control of secondary use: how does the process work if I withdraw my consent?

Here we follow the EHDS and the principle that once data has been issued, it does not have to be adjusted. With each issue, the current status of control will be checked.

5

V2

How are we going to entice researchers to share and metadata data?

This will be described in more detail in subsequent versions. What we are thinking of is setting up an environment for the researcher where he or she is facilitated by means of a wizard to take the necessary steps with the tools that support the researcher to carry out this step as optimally as possible.

We are also thinking of a library with metadata schemas of fellow researchers that can be used to build on.

But for the Health-RI wiki version 2.0, these ideas have not yet been sufficiently elaborated to be able to publish as a supported solution

6

V2

Traceability of data is important for reproducibility research, among other things. Is that already safeguarded?

No, that is not yet guaranteed.  It does fall under solutions to be worked out that will be published in later versions.

Under the GDPR, a controller has the obligation to maintain a processing register. In any case, this must include the following:

• name and contact details of your company

• any other organizations with which you determine which data you process and how

• the data protection officer if you have one (data protection officer, FG)

• the purpose of the data processing

• a description of the persons whose data you process

• a description of the type of data

• the date on which you must delete the data

• with which organizations you share the personal data and whether these are organizations outside the EU

• what you do to protect personal data

7

V2

Will the infrastructure (Health-RI or VWS or ...) soon offer a coupling key solution?

Arriving at a unique coupling key (such as encrypted BSN) is part of the OVT cluster 2. Health-RI, together with the field parties, has drawn up a 'good story' that describes why the use of BSN is necessary and how it can have a place in the health data infrastructure. the Ministry of Health, Welfare and Sport has started working on this document to amend the law. This could then become a generic function in the infrastructure that should be available not only for primary but also for secondary.

8

V2

Is it also about incentives according to data availability?

Incentives in academia are now mostly focused on publishing and generating and less on making the research data available. One of the obstacles mentioned by the OVT is to create incentives to share data in the academy and thus stimulate thinking about data and data reuse towards data solidarity.

9

V2

Ontologies (with which you can (more easily) do federated analyses, but also central analyses) also play an important role in metadata (the metadating of the data points. An ontology/knowledge model also gives the interrelationships between data points, but describing a data point does not). Reference models have an important role to play.

I agree

10

V2

How is "data solidarity" explained?

A data subject has the right to privacy, and the right to say something about what is done with the data about you. No ownership of data! Data solidarity is the principle that the reuse of data is in the public interest.