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Why does this matter?
By making your medical data digitally available to other healthcare institutions, the exchange of your data can take place more quickly.
- Your healthcare provider outside the Netherlands Cancer Institute can immediately view the data that is important for your treatment.
- Studies that have already been carried out do not always need to be carried out again if the results are already available.
Which medical data is involved exactly?
You give permission to share all information from your medical file with other healthcare providers, except for notes and appointments from the departments of Psychology, Psychiatry and Clinical Genetics (Polikliniek Familiae Tumoren). At this time, we cannot yet make all the data from your file available for exchange. For now, it's just about: radiological images (such as MRI, CT and X-rays).
In time, we will expand to include more data that is needed for your treatment. You can think of:
- your name, age, address and Citizen Service Number (BSN);
- blood values and other test results;
- general information about your health;
- overview of your medical problems and conditions;
- information about prescription medications;
- any allergies and contraindications;
- notes from healthcare providers that record medical information about you.
It is not possible to exclude certain information at this time. If you wish, you can choose not to grant permission for now. You can change your choice of consent at a later time.
Giving permission
With your permission, the Netherlands Cancer Institute will disclose which medical data are available within the Netherlands Cancer Institute. The practitioner outside the Netherlands Cancer Institute with a treatment relationship will receive a summary of the data and an overview of your contact moments. The practitioner outside the Netherlands Cancer Institute is expected to determine which data is important for your treatment and to copy it into his/her own file.
If you do not give permission, your data will not be made available via the exchange system and your data can be requested by you or your external practitioners through regular channels. You can withdraw your consent at any time. The consequences of withdrawing can be found under the frequently asked questions.
You can give or withdraw your consent via:
- your digital patient portal MyAVL
- a desk clerk at the outpatient clinic
Affiliated healthcare institutions
With which healthcare institutions are your medical data exchanged digitally?
Your consent applies to all treating healthcare providers in the Netherlands. In practice, however, not all healthcare institutions are connected yet. We are working this. The goal is to eventually be able to exchange digitally with as many healthcare institutions in the Netherlands as possible. Electronic exchange is currently possible with the following organizations:
- BovenIJ hospital, Amsterdam
- Northwest Hospital Group
In the short term, we expect to expand to:
- Amsterdam UMC (location AMC and VUmc), Amsterdam
- OLVG (location East and West), Amsterdam
- Amstelland Hospital, Amstelveen
- Flevo Hospital, Almere
After that, expansion will take place to more hospitals in the Netherlands. Through this page we inform you through an up-to-date overview of participating hospitals. If the healthcare institution where you are being treated is not yet affiliated, the exchange will take place through other channels, such as secure email traffic.
Control of access
We have made agreements with the hospitals with which we can exchange data digitally about the use and how the information can be accessed. A healthcare provider must have an up-to-date treatment relationship with you in order to be able to consult the internal and external file and then determines which data is necessary for treatment outside the Netherlands Cancer Institute. We actively check for access to your file. A so-called log file registers who has had access to data in your patient file and when. You can also use MyAVL to see for yourself which type of healthcare provider (position and department) has viewed your file.
If you suspect that your file has been unlawfully accessed, please report this to the Data Protection Officer via privacy@nki.nl. You can find more information about data protection at the Netherlands Cancer Institute in our Privacy Statement.
Frequently asked questions about digital sharing of your medical data
Who has access to my medical data?
Only healthcare providers with whom you have a treatment relationship can consult your medical data before your treatment (e.g. your general practitioner, your medical specialist and nurse).
Health insurers, employers and company doctors cannot and may not view your medical data.
Can I choose which information from my medical data is shared or not?
If you give permission for your file to be made available, all information can be viewed. However, an exception has been made for notes and appointments from the departments of Psychology, Psychiatry and Clinical Genetics. This data is not shared with other healthcare providers. Your treating physician is responsible for ensuring that the correct information is included in your file. If you do not wish certain information to be shared, you can choose not to give permission for now. You can change your choice of consent at a later time.
Can I exclude a certain healthcare institution from inspection?
It is not possible to exclude certain healthcare institutions. Your consent applies to all affiliated healthcare institutions. Health insurers, medical examiners, company doctors, insurance doctors do not have access to the patient data in the electronic patient record via the electronic exchange system.
How can I exclude one specific medical specialist from inspection?
It is currently not possible to exclude a specific healthcare provider from access. If you wish, you can choose not to grant permission for now. You can change your choice of consent at a later time.
I am being treated abroad or at a healthcare institution that is not yet affiliated. What now?
If your healthcare institution is not affiliated with the exchange system, your data can be requested via other (non-digital) channels, such as by post or fax.
Does participation in electronic data exchange cost money?
There are no costs associated with exchanging your data.
How long will my consent be valid?
Your consent has no end date and will remain valid until you withdraw it. You can withdraw your consent yourself via MijnAVL or via a desk employee at the outpatient clinic.
I don't want to give permission, how do I arrange that?
If you do not want to give permission, you do not have to do anything. No consent is recorded and external healthcare institutions cannot consult your medical data, even in an emergency situation. You can change your choice of consent at any time.
Discuss the consequences with your medical specialist or nurses if you do not give permission. It may have consequences for follow-up actions in other healthcare institutions, such as re-conducting examinations, delays in the transfer and/or re-providing information. Incidentally, you can always expect good care, with or without permission.
Will I receive proof that I have given permission?
No, you will not receive proof that you have given permission. When visiting the hospital, the medical specialist, nurse or outpatient can see whether permission has been given. You can also view this yourself via MijnAVL.
How do I know if my data can be consulted by my practitioner at another healthcare institution?
If you do not know whether your data from another healthcare institution can be consulted, you can read this in MyAVL or ask for it at the outpatient clinic desk. They can check whether your consent has been recorded. If you have given permission to share your data in another healthcare institution, the information will automatically be made available to other healthcare institutions that are affiliated with the exchange system.
What about laws and regulations for electronic exchange of medical data?
Healthcare institutions must ensure that their information systems are secure and well-managed. They must implement technical and organisational measures in accordance with the state of the art to protect the availability, accuracy and confidentiality of your data. In addition, every healthcare provider has a duty of confidentiality. Your healthcare provider is obliged to handle your data with the utmost care.
How can I give permission for my child?
In general, no children under the age of 16 are treated at the Netherlands Cancer Institute. In general, for children up to the age of 12, the parent/guardian gives permission. For children aged 12 to 16, both the parent/guardian and the child must give permission. Children and adults from the age of 16 give their own permission.
Can someone else also give permission for me? For example, in case of incapacity or outside my consciousness?
Your legal representative can grant permission on your behalf. If you arrive at the hospital unconscious, the healthcare institutions will exchange your data via other (non-digital) channels, such as by telephone or fax.