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30 march 2017

What happens to my data?

In late March 2017, Zorg.nu (AVROTROS) featured an item on the electronic exchange of Dutch citizens' medical data. Particularly on the exchange through the National Exchange Point. Questions about giving permission and what happens to medical data led to a lively discussion, both in the studio and online. 'Volgjezorg' tries to answer all those questions: Everyone can check online whether ones permission has been processed properly, which data was accessed, and by whom. This transparency works. Because not all patients know precisely how giving permission works, 'Volgjezorg' will explain below how the permission process works.
Logo Zorg.nu

How does the registration of my permission work?
Your healthcare providers may only make your medical information available to other healthcare providers if they have your prior permission. Usually your GP or pharmacy asks you for permission. If you consent, they list this in your file in their medical information system and your BSN (Civic Service Number) is registered with the National Exchange Point. You can see this in your tracking-overview in the tracking portal. You can also give your permission online at 'Volgjezorg'.

Not everyone always identifies with the permission registration, because:

  • Consent can also be given orally during regular consultation hours. Patients sometimes forget that they have given permission (for example during a consultation). In order to avoid this, we advise healthcare providers to ask for consent in writing;
  • Permissions are not always processed directly by the healthcare provider. Only processed permissions are visible in the tracking-overview in the tracking portal;
  • Unfortunately, sometimes it may happen that a healthcare provider accidentally incorrectly registers the permission ("yes" becomes "no" or "no" becomes "yes").

VZVZ's responsibility
VZVZ is the administrator of the exchange point for which permission is requested. VZVZ has taken on the responsibility for advising and guiding healthcare providers when asking for consent and registering the answer. This comprehensible leaflet >>link naar UK leaflet<< and the permission form are important tools.

If your permission is registered incorrectly, this can always be corrected. You can always check whether and your data was accessed and by whom. Because your permission is registered in the healthcare provider's system, Volgjezorg cannot alter this. This can only be done by the healthcare provider, ie. your GP or pharmacist. If you need assistance in correcting your permission, 'Volgjezorg' can help you with this.

Healthcare providers are not obliged to share your information
Three quarters of the Dutch population regularly visits a healthcare provider. 93% of them thinks that their medical data are automatically exchanged electronically. In fact, they assume this has been done already for a long time, in our digital world with online banking, Airbnb, Spotify and Netflix. Regularly, they ask questions like: "Why do I need tell every healthcare provider my family (medical) history?", "Why do I receive a CD-ROM with my MRI-images?" Or "Why do blood tests need to be redone?" and "Why do I need to get a printed list of my medication at my pharmacy?" All questions which should not be necessary to ask in our digital world.

Even if you consent, your healthcare provider is not obliged to share your data digitally with other healthcare providers. According to our information, about 5% of healthcare providers in the Netherlands are principally against electronic data exchange. They are worried about their professional confidentiality or the patient's privacy. Despite evidence of positive effects on patient safety, health benefits, and cost-cutting by 30% in healthcare (for example, due to the reduction of duplicate diagnosis, rechecking a patient's medical history, and fewer medication errors). And, last but not least, that you as a patient know that your most important medical information is available, regardless of which healthcare provider you go to.

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