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Sharing and transferring health data

Watch this video to find out how health data is shared and transferred.
MELANIA TUDORICA: You have learned in the previous steps that medical professionals have a lot of data about you. Not only personal data, but also sensitive data. This data is shared among medical professionals to help you get the medical treatment you need. But as you have seen, health data is a very broad concept. This means that other organisations also know a lot about your health status without you even realising it. For example, the running app Anna uses shows information about her fitness. Her employer has information about her health status, such as when she is ill. And her family and friends will eventually find out that she is pregnant. But it goes even further than that.
Does it sound familiar to you that when you use Google or another search engine for a certain purpose, advertisements start popping up on various websites you visit? Yes? Let’s find out how this goes for Anna.
MARC: Maybe we should look for what to expect when you’re expecting?
ANNA: Good idea. Look at how much information there is.
MARC: Look, an advertisement for diapers. You’re already getting targeted advertising for babies.
ANNA: I can’t believe how fast this goes. And the funny thing is, I told my doctor I don’t want anyone to know yet. And now Google seems to know and– who else? Well, I have to apply for postnatal care, anyway, so let’s do it.
MARC: I think that’s a good idea– one less thing to worry about.
ANNA: But I do have an elevated heart rate. It seems to spike a lot. Here, I have an app. Let me show you.
MARC: Whoa, you’re right. Maybe it would be best to see your gynaecologist about this, just to be sure. Let’s google it.
ANNA: Look, there’s a German specialist who specialises in multiples. Maybe I should go and contact him?
MARC: I think that’s a good idea, especially given your elevated heart rate.
ANNA: OK, I will definitely contact my gynaecologist about this.
DOCTOR: So Anna, welcome back. What can I do for you?
ANNA: Well, I’m getting used to the idea of being pregnant with twins. But I do have some concerns due to my elevated heart rate. And I saw a German specialist who specialised in multiples, so I would like to get a referral.
MELANIA TUDORICA: Stop! Let’s freeze for a moment. Now Anna wants to go abroad? Where’s all the data going? Let’s map Anna’s data flows. Let’s go back to the beginning. Anna wasn’t feeling well and went to the GP. The GP opened her patient file and referred Anna to the hospital. The hospital treated Anna and sent the necessary information back to the GP. The gynaecologist now refers Anna to the German specialist, which means Anna’s data crosses the border. The German hospital will send the file back to Anna’s gynaecologist and GP, so here the data crosses the border again. All these health care providers share information with Anna’s insurance company so that her care can be paid for.
Apart from this, Anna also needs postnatal care. Postnatal care in the Netherlands is part of the Dutch basic care insurance. Anna needs to contact her insurance company who will help her find a postnatal care institution. In certain cases, for example, when there is a medical indication, the postnatal care institution will refer Anna to the hospital. Furthermore, the necessary information might also go to the GP. After giving birth, Anna will have to register her child to the municipality. Finally, we saw Anna using Google and certain apps to inform herself. What Anna does not see on screen is that these service providers send information to data brokers.
The data brokers in turn generate Anna’s online profile and send her targeted advertisements based on her searches, like the diaper one Anna saw pop up on her screen only a few minutes after she started searching for information about pregnancy. In the next step, we will zoom in to transfer of data in more detail. And we will pick up where we left off with Anna soon.

Medical professionals have a lot of data about their patients. Not only personal data, but also sensitive data. This data is shared among medical professionals to help patients get the medical treatment they need. Anna’s GP and gynaecologists share her data among themselves, but also share it with her insurance company and her postnatal care institution.

Health data is however a very broad concept, meaning that other organisations may also process health data. This includes for example the running app Anna uses and her employer, but also data brokers who track and generate Anna’s online profile in order to send her targeted advertisements.

You now have a better idea of how many organisations process Anna’s health data. Are you suprised by how many organisations and people process Anna’s health data? We would like to hear your ideas on this topic on the discussion board.

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