As soon as your child comes to us at the UMCG and is admitted as a patient, we will start processing his or her personal data. By processing we mean that, for example, we will store and supplement these data, supply them to your health care providers and, in due time, delete these data again. If your child is treated by us, we will be processing his/her medical data in the patient file.
What and why?
We need the personal data of your child to provide him or her with the best possible care, which is also what we stand for! Every health care provider will do his or her utmost to give your child the best possible treatment. For this purpose, we need your child’s medical data, such as what you and/or you child have told your doctor, test results, the diagnosis and the treatment plan. Apart from medical data, we also need other personal data, such as name, address, date of birth and CSN. We need this to be able to identify your child and to make sure we don’t confuse your child with another patient. In terms of all this information, we will not process any data other than those we need to give your child proper care. We will keep the data at least for 15 years after the treatment has been completed, counting from your child’s 18th birthday. Certain data in the medical file, the so-called ‘key records’, will be retained for 115 years, counting from your child’s date of birth. These key records will include your child’s discharge letter, operation report, anaesthetist’s report, pathologist’s test results and emergency admission report.
We consider it our duty to protect the data of your child as best we can, which is part of our daily work. All health care providers and assistants directly involved in your child’s treatment are under a legal duty to observe confidentiality and will not disclose his or her data to third parties. If we would nevertheless find it important to share this information with other parties, then you and/or your child will have the right to decide and we will ask your permission. In emergencies, however, we may make a different decision.
Your child’s rights depend on his/her age
Depending on your child’s age, you will either be allowed to make decisions yourself, make decisions together with your child or your child will be allowed to make his/her own decisions.
Is your child younger than 12?
As parents or legal representatives, you will have the right to make decisions concerning your child and exercise his/her rights: the rights to inspect the data and to ask for a copy, the right to change or supplement the data and the right to have data deleted.
Is your child between 12 and 16 years of age?
Your child will have the right to take part in deciding and if permission is required, it will be asked of both your child and yourself (double permission). Your child will also be allowed to ask if he or she can see his/her own file. As a parent, you will have the right to inspect the file together with your child. However, if your child does not want you to inspect the file, your child’s doctor will be entitled to refuse inspection by you. The same applies to changing data or having data deleted.
Is your child 16 or older?
Your child will have the right to make his or her own decisions and whether or not to give permission when this is required. Your child will also be entitled to inspect the file and to ask for data to be changed or deleted. As a parent or legal representative, you will not have this right. It is only with your child’s permission that you will be able to inspect your child’s file, to change data or ask for data to be deleted. Your child can give you permission by writing and signing for it that you, as his/her parents, have permission to inspect, change or delete the file.
Your child’s visitors
That we do not simply share your child’s data with other people may have consequences for people who wish to visit your child during his/her stay at the UMCG. We find it extremely important that you and/or your child are able to decide who is allowed to visit him/her and who is allowed to know that your child is staying at the UMCG. Consequently, if a call comes in for your child at our central telephone number, we will not supply any information about your child, but tell the caller that he or she may contact you, your child or your contact person directly. Visitors who arrive at our reception desk will only be given information about your child if you and/or your child have given us permission to do so. This will then be information such as whether or not your child has been admitted to the UMCG and, if so, in which ward or room your child is staying. Before your child is admitted to the UMCG, we will ask you and/or your child whether or not you and/or your child will give us permission to give this information. The permission will apply to anyone who asks for your child at our reception desk, including, for example, a minister or priest. If you and/or your child do not give permission or, for some reason, we have not been able yet to ask for this permission, then, to protect your privacy, we will not provide any information about your child’s situation, not even whether or not your child is staying at the UMCG.
If your child has been admitted through the Emergency Department, then a friend or family member may contact our reception desk to find out where your child is. In this case, the receptionist will refer this person to the Emergency Department. It is then up to the Emergency staff to decide whether or not information may be supplied about your child. Of course, they will take into account whether or not your child is able to speak and verify that this person is indeed one of your child’s close friends or relatives. If your child is transferred from Emergency to a nursing ward, you and/or your child will be asked as yet for permission to give information about your child to visitors.
You and/or your child may inspect any personal data and the complete patient file we have of your child. You and/or your child may ask the doctor in charge, who is not entitled to refuse this, although he or she may screen off certain parts if these concern another person, such as a family member. The doctor will not be obliged to give inspection of his or her personal work notes.
You and/or your child may ask for a copy of your child’s file free of charge either by sending an email to [email protected]
or a letter to the Head of the Department in which your child is treated or to the Director of Patient Care, Quality & Safety UMCG, internal postcode LA10, PO Box 30001, 9700 RB Groningen. Send a copy of your and/or your child’s identity card with your request. This identity card will be destroyed immediately after verification of identity. You and/or your child may include a request for copies of photos which have been taken. If you and/or your child want more than one copy of the patient file, we will charge a reasonable fee for the extra copies.
You and/or your child have the right to have data changed. For example, if your child has moved and we have the wrong address or if we have made a mistake with his or her date of birth or misspelt his or her name. These are changes in factual data. The diagnosis, for example, you and/or your child will not be allowed to change, but you and/or your child may always add a personal point of view to the file, as well as the outcome of a second opinion. If you and/or your child wish to change any data, you and/or your child may mention this to one of the persons in charge of your child. If you and/or your child want to add something to your file, you may mention this to the doctor in charge, who will make sure that your personal point of view or any second opinion will be added to the file.
You and/or your child may ask for your child’s file to be deleted, whether the entire file or a part of it. The request to have the file deleted may be sent by email to [email protected]
or by letter to the Director of Patient Care, Quality & Safety UMCG, internal postcode LA10, PO Box 30001, 9700 RB Groningen, with a clear copy of your child’s identity card. In principle, the UMCG must comply with the request for the (partial) deletion of your child’s file, but not in all cases. For example, if the doctor in charge of your child is of the opinion that it is clearly in your child’s interests to retain the file or parts of it. After all, your child’s doctor is also bound by his or her duty to provide care. In this case, the doctor in charge may reconsider the deletion of the file together with you and/or your child. The doctor may also refuse the request if he or she is obliged to retain your file for a certain period of time in accordance with the law or regulations. For example, we are obliged to retain the financial details of invoices for medical care for 7 years. Likewise, if it is extremely important for another person that your child’s file is retained, the request to have it deleted may be refused. This may be related, for example, to the interests of your child in connection with hereditary diseases. The doctor in charge must be able to give you and/or your child his or her reasons for not being prepared to delete the file or parts of it.
If you and/or your child don’t agree with this and still wish to have the file deleted, you and/or your child can ask the doctor in charge for an additional explanation and discuss the options together. You and/or your child may also lodge a complaint with the UMCG. To lodge a complaint, you may contact our Patient Information Desk or submit the complaint to our Complaints Officer. For more information, please see the pamphlet “UMCG Complaints Procedure”. Depending on your child’s age, he or she may also lodge his or her own complaint.
You and/or your child will have the right to take personal data with you and to transfer it to another hospital or health care provider. This is also called data portability. This right only applies to information which you and/or your child have supplied to the UMCG actively and consciously. This includes the measuring results of a pacemaker or sphygmomanometer. The right to data portability does not apply to the information recorded by the doctor in charge on the basis of details supplied by you and/or your child, such as conclusions, diagnoses, surmises and treatment plans.