Scientific research consent

We advise you to read this leaflet carefully. You can then decide whether or not to give us your consent to use your data and residual material for scientific research. You can communicate this yourself via the MyMUMC+ patient portal or at the reception desk during your visit.

Scientific Research

When you are a patient with us, we collect and store various data and body materials from you to diagnose and monitor your illness and treatment. These include scans, blood, urine or tissue and data stored in your electronic patient record, such as blood results or weight. We would like to use some data, images and body materials obtained as part of your care for scientific research. This is called ‘further use’. No additional data or body material need to be collected for this purpose. We are permitted to use previously collected materials if you give us your prior consent. This leaflet will tell you more about this consent and about scientific research and why this research is so important.

Why is your consent important?

When you give your consent for further use by Maastricht UMC+, you help the hospital and healthcare in the Netherlands: it enables us to better fight diseases and improve care. Indeed, scientific research teaches us more about how to prevent, treat and cure various diseases and related conditions, and how to improve our care. In addition, scientific research gives us greater insight into how to improve quality of life. This is important for all current and future patients.

For which medical data and body material do we request your consent?

The following, for example, can be used for medical research:

• Data about you, e.g., your height, weight, gender and age.
• Details of your disease(s), what treatment/medication you are receiving and the results thereof.
• Visual and audio material, e.g., X-rays, ultrasounds, scans or recordings made during surgery or the doctor’s appointment.
• Body material, such as blood or urine taken from you or tissue removed during surgery.

We believe it is important for you to know that we protect your privacy as much as possible when further using your data. This means that the data we reuse should preferably not be directly traceable to you. We explain later in this leaflet how we handle your data with care.

Why is body material stored?

Body material, such as blood, tissue or urine, is used to determine exactly what is wrong with you. The material that is left over is kept by the hospital. If you return to us with new complaints, it is sometimes necessary for us to look again at that body material and, for example, be able to compare it with newly collected body material.
Medical research using your body material will only take place if there is enough still available. Some tissue is always preserved for any diagnosis and treatments you may need in the future.

What do we want to do with your medical data and body material?

• We use these to conduct medical research at our hospital: how can we prevent, treat and cure diseases? And how can we improve patient care?
• As a hospital, we also collaborate a lot with scientific researchers from other hospitals and sometimes with researchers at companies, such as pharmaceutical companies. These are sometimes researchers based abroad. When we collaborate with other researchers, we also want to be able to share data and body material with them. You can read how we do this later in this leaflet.

We handle your personal data and bodily material with great care. You can read below how we do this.

• We comply with the rules and legislation governing medical research and data processing, such as the General Data Protection Regulation (GDPR). We also abide by the agreements on medical research between doctors, researchers and patient associations, such as those contained in the Dutch Code of Conduct for Health Research of the Committee on Regulation of Health Research (COREON).
• Any research that uses residual material and/or reuses medical data is subject to prior review by a committee.
• If we need data from your patient record for medical research, your data will be coded as much as possible, so that you are not directly recognisable for the researcher.
• If we collaborate with researchers outside the hospital, we only share encrypted (i.e., not directly traceable) data and make arrangements for them to handle this encrypted data securely. Here too, we apply the data protection rules agreed in the EU, even if the researcher works outside the EU. We record these agreements in writing.
• Our Privacy Statement tells you more about how we handle your data and materials. You can also read there what rights you have. Our Privacy Statement can be found on our Maastricht UMC+ website: https://www.mumc.nl/en/privacyverklaring.

Chance finding

Very occasionally, a researcher may come across something that could be important to your health or the health of your family members. We call this a chance finding. We will assess whether it is important for you to know about it. If it is, your treating physician or your GP will inform you. If we are permitted to use your data and residual material for research, but you do not want to receive information about chance findings, please indicate this via our website: https://www.mumc.nl/patient-bezoeker/praktisch/academische-zorg/medisch….

Do you want to give your consent?

If you wish to give consent for further use of your data and residual material for scientific research, a staff member at the central reception desk can record your choice in your file during your next visit, or you can indicate this yourself via the MyMUMC+ patient portal.

How long is your consent valid?

Once you have consented to the use of your medical data and body material for medical research, your consent will remain valid unless you notify us of a change. Your consent also applies to medical data and body material we collect from you in the future.

Do you wish to withdraw your consent?

You can withdraw your consent at any time, with no further consequences. You can also do this via the MyMUMC+ portal or the central reception desk. However, the results of medical research that may have been obtained using your data before that time will continue to exist.

Do you want to refuse your consent?

If you do not give us your consent, it will not affect your treatment or your contact with us. However, you should make this known via MyMUMC+ or at the central reception desk during your next visit. It is only once your choice has been recorded that your objection will be known to everyone. You do not have to give any reason for refusing to give your consent. You will receive the same care from your doctor and healthcare providers. We will continue to keep your data and body materials in order to treat you, now and in the future, but we will not then use your data and materials for medical research involving the coded reuse of data. We may still ask you to participate in other specific studies, such as completing questionnaires or taking part in clinical trials. If you provide additional information or donate body material for this purpose, we will always ask separately for your consent.

Want to know more?

You can find more information about scientific research at MUMC+ on our website.