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Cross-border health data and research

Watch this video to find out what happens when Anna's health data crosses the border.
5.6
DOCTOR: Good afternoon, Anna. What can I do for you?
8.4
ANNA: Well, I’m pregnant with twins, and I have an elevated heart rate ever since. So I understand that twin pregnancies are high-risk pregnancies. And I want to see a specialist. So my doctor referred me to you, and I believe she sent all my medical files.
24.2
DOCTOR: Well, I did receive your medical file, indeed, and your heart rate is a bit on the high side. That’s nothing to worry about, really, but I would like to do some tests. Would you follow me into the next room please?
37.1
OK, Anna, we have to wait for a few additional test results. But for now, everything seems fine. But I would like to keep an eye on you, though, during your pregnancy.
45.3
ANNA: OK. Wow. That’s a big relief. And, yeah, I would like for you to stay on as my doctor.
50.6
DOCTOR: That is fantastic. Well, as you know, I’m an expert in the field, and I do a lot of research together with Dutch hospitals. Would you be willing to participate in this research?
59
ANNA: Mm, yeah, I don’t know. What does it mean?
68.4
RESEARCH NURSE: The patient will first receive information on paper. And then, we will have an appointment where the research will be explained so the patient knows what will be expected of her when she’s decided to participate. Then, we will have maybe one or two conversations, which is needed by the patient, to explain the research again. And then, she has time to think about it. And once she has decided to participate and she has no doubts about it, she signs an informed consent. And then, she’s participating. Once she has given consent, at any time during participation in the study, she can withdraw.
122.9
We would like to prevent that of happening, of course. So it’s very important that the patient is very well informed, that she has time to think about her participation, that she has been given opportunity to ask her questions. And once she’s sure and she signs consent, then she is participating, of course. But at any time during her participation, she’s in charge, and she will be in control about her consent.
156.1
It depends on the research, of course. We’re talking about research which is taking place in a hospital in Amsterdam. And we are participating in that study. So the data will be collected by us and sent to Amsterdam.
173.9
Of course, we have to know which patient is participating. So by us, it will be identified, but by the researchers, for example, in Amsterdam, they won’t know who the patient is. So the data will be anonymised and then sent to the hospital in charge. No. In this kind of research, no. For future care. It’s for the future patients. So we don’t know what the benefit is for the patients who are participating. They might have benefit of participating, but we don’t know. So it’s for the future patients.
222.5
ANNA: OK. Well, I can see that it is for a good cause, and if it will help women in the future, then I am willing to participate.
230.1
DOCTOR: Fantastic. Well, I will see that you get the paperwork, and please, read it carefully and sign it. Now, some of the tests you can actually do in your hometown.
236.9
ANNA: OK. Will do. Thank you.
238.6
DOCTOR: I’ll see you next time then. Bye.
240.6
ANNA: Bye.
241.4
MELANIA TUDORICA: You have learned that health data can cross borders in different ways. In Anna’s case, her medical file was sent from her Dutch gynaecologist to her German gynaecologist and back. As regards modern technologies, we have seen that it is sometimes difficult to determine where data is stored and how it is exchanged with third parties. In those situations, it is also possible that data crosses borders. Another way that data can cross a border is in a research context. As we have seen, Anna’s Dutch and German doctors worked together in a research project.
273.3
As we just heard the research nurse explain, in case of a collaboration, the research data is anonymised by the institution collecting the data and then exchanged between the partners anonymously. Since research is very important due to societal interests, you will learn more about this in the next activity.
You have learned that health data can cross borders in different ways. In Anna’s case, her medical file was sent from her Dutch gynaecologist to her German gynaecologist and back. As regards modern technologies, we have seen that it is sometimes difficult to determine where data is stored and how it is exchanged with third parties. In those cases it is also possible that data crosses borders.
Another way for data to cross a border is in a research context. Anna’s Dutch and German doctors work together in a research project. In case of a collaboration, the research data is anonymised by the institution collecting the data and then exchanged between partners anonymously. Anonymisation as a safeguard will be discussed later this week. But first, let’s find out more about research, a very important way to collect, use and share health data considering the societal interests.
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