JHN strictly adheres to laws and regulations governing scientific research. There are two laws relevant to this: The Privacy Act General Data Protection Regulation (AVG) and the Medical Research Involving Human Subjects Act (WMO). These laws stipulate that medical data may be used under a number of conditions. For example, the research must serve a public interest, the research question cannot be answered with other types of data, and asking explicit consent for use of data must be unworkable. In addition, patients must be informed about the use of their data and have the opportunity to object. Finally, the likelihood of data being traceable to individuals must be minimal.

How is JHN protecting your privacy?

The following procedures are implemented to protect your data.

1. Data such as your name, BSN number, address, telephone number and insurance number are not included in the database. In order to be able to link your data with other sources that are relevant for research, such as Nederlandsche Kanker Registratie (Dutch Cancer Registration) or CBS, encrypted codes, or pseudonyms, of your name, gender and address details are created by a so-called trusted third party when retrieving the data. JHN cooperates with Zorg TTP for this purpose.
2. To reduce the traceability of your data, data that are important for research are sorted; for example, instead of the full zip code, only the four digits of the zip code are used and instead of the full date of birth, only the month and year of birth are used.
3. Data that is not important for doing research is not retrieved.

In some studies, it is important that the healthcare provider can link findings to patient data. This data is fed back to your primary care physician with a pseudonymization code, and only within the primary care practice can this code be translated back to the identifiable patient by your primary care physician. This allows the GP to add their own data to the record without researchers knowing these patients.

Doordat de gegevens gepseudonimiseerd zijn, dus niet tot de patiënt herleidbaar, is het niet mogelijk om u inzage te geven welke gegevens zijn opgeslagen en kunt u uw opgeslagen gegevens bij JHN ook niet aanpassen.

The JHN stores personal data no longer than strictly necessary to realize the purposes for which data is collected.

How can I object to the use of my data or participation in research?

Your primary care physician informs his or her patients about participation in JHN through the website, posters and waiting room information, and upon enrollment in the practice. If you object to the use of your data for JHN, you can let your health care provider know. He or she will note this in your medical record. Then, each time data is transferred, your primary care physician or organization will indicate which patients do not participate. As a result, your data will not be included.

Als u niet benaderd wilt worden voor deelname aan wetenschappelijk onderzoek waar uw huisarts aan meewerkt dan kunt u dit ook kenbaar maken bij uw huisarts.

For further questions, please contact: SecretariaatJHN@umcutrecht.nl