As soon as your child comes to us in the UMCG and your child is registered as a patient, we will start processing their personal data. By processing we mean that we will, for example, store the data, add to it, provide it to your health care providers and, after a while, also delete it. If your child is treated by us we will process their medical data in the patient file.
What and why?
We need your child's personal information to provide him or her with the best possible care, that's also something we stand for! Every health care provider does their utmost best to give your child the best treatment. To provide this, we need your child's medical information, such as what you and/or your child tell the doctor, test results, the diagnosis and treatment plan. In addition to their medical information, we also need other personal information, such as your name, address, date of birth and BSN. We need this to identify your child and to ensure that we do not confuse your child with another patient. We will not process more data than we need to to provide you with good care, this rule applies to all data. We will retain the data for a minimum of 20 years after the end of treatment, starting from their 18th birthday. We keep certain data from the medical record, called "core documents", for 115 years from the birth of your child. Core documents include the discharge letter, surgery and anaesthesia report, pathology test results, and first aid report.
We see it as our duty to protect your child's data to the best of our abilities, this is part of our daily work. All caregivers and staff directly involved in the treatment of your child have a legal duty of confidentiality and will not share the data with others. If we do feel it is important to share this data with others, you and/or your child will be involved in the decision and we will ask your and/or your child's permission. In emergencies or emergency situations, a different decision may be made by us.
Rights of your child depend on age
Depending on your child's age, you may make the decisions yourself, you may make decisions together with your child, or your child may make their own decisions.
Is your child under the age of 12?
As parents or legal representatives, you have the power to make decisions about your child and exercise their rights: the right to access data and to request a copy, the right to amend or supplement data and the right to have data destroyed.
Is your child between the ages of 12 and 16?
Your child is allowed to have a say and in the event that consent is sought, consent will be sought from your child and you (double consent). Your child is also entitled to ask to see their own file. As a parent, you have the right to access the file together with your child. However, if your child does not want you to look at the file, your child's doctor may refuse to allow you to do so. This also applies to changing information or having the file destroyed.
Is your child 16 years of age or older?
Your child can make their own decisions and decide whether or not to give permission when this is asked. Your child is also allowed to access their own file and ask whether the information can be changed or destroyed. As a parent or legal representative, you are not allowed to do this. It is only possible to access your child's file, change something or ask for it to be destroyed if your child authorizes you to do so. Your child can do this by submitting a signed request stating that you, as parents, have permission to access, change or destroy the file.
The fact that we do not share your child's information with others may have implications for people who want to visit your child while they are in the UMCG. We feel it is very important that you and/or your child can decide for yourself who may visit them and who is allowed to know that your child is staying at the UMCG. Therefore, if a call is made to the central number of the UMCG for your child, we will not provide any information about them, but will indicate to the caller that you, your child or your contact person may be contacted. For visitors who come to the front desk, we will only provide information about your child if you and/or your child have given us permission to do so. This includes information about whether your child has been admitted to the UMCG and, if so, on which ward and in which room your child is staying. Before your child is admitted to the UMCG, we will ask you and/or your child whether you give us permission to provide this information. This permission applies to anyone who asks us at the reception desk about your child, including, for example, a spiritual counsellor. If you and/or your child do not give permission, or the situation has prevented us from asking permission, we will not provide any information about your situation, including whether or not your child is staying in the UMCG.
If your child is brought in via the Emergency Department (A&E/ER), it sometimes happens that a neighbour or family members ask our receptionists where your child is. In that case, the desk will refer this person to the emergency room. It is then up to the staff of the ER to determine whether information about your child may be given. They will, of course, take into account whether your child is approachable and verify that this person is indeed a relative or neighbour of your child. If your child is transferred from the emergency department to a nursing ward, you and/or your child will still be asked for permission to provide information about your child to visitors.
You may review your personal information and your complete patient record with us. You can ask your doctor for this. Your doctor may not refuse to do so. However, the doctor may hide certain parts if they contain information about someone else, such as a family member. The doctor is also not required to give access to their personal work records.
You can request a free copy of your record. To do so, send an e-mail to [email protected]. You can also send a letter to the Head of the department where you are being treated or to the Director of Patient Care, Quality & Safety UMCG, house zip code LA10, P.O. Box 30001, 9700 RB Groningen. In your request, please indicate whether you would like copies of any photographs taken. If you would like multiple copies of your patient file, we will charge a reasonable fee for the additional copies. Also provide a telephonenumber, so we can call you, when necessary.
You and/or your child may change data. For example, if your child has moved and the registered address is no longer correct. Or if we have made a mistake in your child's date of birth or have written their name incorrectly. All of the aforementioned examples are about changing factual information. However, you and/or your child may not change a diagnosis. You and/or your child are allowed to add your own views to the file, as well as the outcome of a second opinion. If you and/or your child want to change the data, you can notify one of your child's doctors. If you and/or your child want to add something to the file or alter incorrect information, you can If you wish to add anything to the file or wish to change any factual inaccuracies in the file, you can do so by sending an e-mail to [email protected] or a letter to the director of Patient Care, Quality & Safety, house zip code LA10, P.O. Box 30001, 9700 RB Groningen
You and/or your child may request that the file be destroyed. You and/or this child may request this for all or part of the file. You and/or your child can e-mail your request to have your file destroyed to [email protected] or submit it in writing to the director of Patient Care, Quality & Safety UMCG, home zip code LA10, PO Box 30001, 9700 RB Groningen, including a clear copy of your child's identity document. In principle, the UMCG must comply with your request to (partially) destroy your file, but not in all cases. This is the case when your child's doctor believes that it is clearly in your best interests to keep the file or parts of it. The reason why the doctor has a right to do so, is because they are also bound by their duty of care. The doctor can then reconsider the destruction in coordination with you and/or your child. The doctor may also refuse to destroy the file if he or she is required by law or regulation to keep it for a certain period of time. For example, if it is financial data about billing for care, we are required to keep it for 7 years. Also in the event that it is of great importance to someone else that your child's file be kept, your request for destruction may be denied. This might include, for example, your child's interest in relation to hereditary diseases. The doctor must be able to justify to you and/or your child why they do not want to destroy the file or parts of it.
Do you or your child disagree and do you still want the file to be destroyed? You and/or your child can ask the doctor for an extra explanation and discuss this with them. You can also file a complaint with the UMCG. To file a complaint, please contact the Patient Information desk or submit a complaint to our Complaints Officer. See here for more information and the brochure 'Klachtenregeling UMCG'. Depending on the age of your child, you can also do this yourself.
Transferring data to other care providers
You and/or your child have the right to take your personal data and transfer it to another hospital or health care provider. This is also called data portability. This right only applies to data that you and/or your child have actively and knowingly provided to the UMCG, including data from a pacemaker or blood pressure monitor. The right to data portability does not apply to information that the doctor determines based on the data provided by you and/or your child, such as conclusions, diagnoses, suspicions and treatment plans.