Radboudumc Technology Center Health data

Information for patiënts

At the Department of Primary Care at Radboudumc, we collect information from family doctors or general practitioners (GP) for scientific research. This research helps us to learn more about health, illness, treatment and prevention. We use this knowledge to improve GP care for patients now and in the future.

For this research, we collect information from the medical record held by your GP (without your name or any other directly identifiable information). This may include information about your health and treatment, such as symptoms and diagnoses, prescribed medicines, appointments and other contact with your GP practice, referrals, and test results and measurements.

Medical information is private. Naturally, you do not want just anyone to have access to it. We therefore take strict measures to protect your information.

• We protect your information carefully

  Your GP records medical information on a computer. Researchers at Radboudumc would like to reuse this information for (national) statistics and scientific research. For this purpose, your GP provides us with a coded copy of your medical information. Information that directly identifies you, such as your name and full address, is removed and replaced with a unique code. Only your GP can use this code to link the medical information back to you.

  Your medical information is stored by RTC Health Data in a secure digital environment. We use current security measures and follow all relevant laws and regulations. The unique code is also stored securely, in a separate system. The code and your medical information are always kept safely and separate from each other.

  Only authorised technical staff at RTC Health Data have access to these secure systems. They are required to handle your information carefully.

• Researchers can only use information under strict conditions

  Researchers do not automatically get access to the information stored in the secure system.

  They must first submit a request. A specialist review team assesses each request. This team includes data experts from RTC Health Data and GPs. The team checks whether the research has a clear purpose and whether it could help improve GP care. Protecting your privacy is always an important part of the decision.

  When a request is approved, researchers receive only the information they need for that particular research study. They can use this information only in Radboudumc’s secure research system. Only the researchers involved in the study can access it. They must always handle the information carefully.

  We keep a careful record of who uses the information, which information they use, why they use it and under what conditions.

• Researchers cannot directly identify you

  Before medical information is made available for research, we carefully check whether someone could still be recognised from a combination of variables, such as age, sex and illness. When necessary, we make the information less detailed or combine it into larger groups. Research results must never make it possible to identify individual patients.

  For some studies, researchers may wish to invite patients to take part in additional research. This will always be arranged through your GP practice. Your GP practice will first give you information and ask whether you would like to take part. It is always your decision.

• We sometimes combine information from different sources

  For some research, information from GP practices needs to be combined with information from another register or research source. For example, a researcher may want to find out whether patients with a particular health problem are referred to the right type of specialist or the right hospital department. We only combine information from different sources when this is necessary for an important study. We carefully consider whether this is justified and always follow the relevant laws and regulations. Your information will continue to be protected.

  We never use information that directly identifies you, such as your name or full address, to combine information from different sources. This also applies when that information is available in the other source. Instead, we may use details that do not directly identify you, such as your date of birth together with your sex. If the information cannot be safely combined in this way, we will not combine it.

• You have rights and can object

  • You have the right to receive information about how your medical information is used. Your GP practice can explain this to you.
  • You can also object to the use of your information for research. If you object, we will not collect your information.
  • You do not have to give a reason. Objecting will not affect the care you receive.
  • You can object simply by telling your GP or a member of staff at your GP practice.

• You can always ask questions

  Do you have any questions? We are happy to answer them. Please contact your GP practice or RTC Health Data at Radboudumc by emailing RTC.Healthdata@radboudumc.nl.