Hepatitis C data collection

Data is collected to gain insight in the hepatitis C epidemic and to improve the treatment and prognosis of hepatitis C in the Netherlands. The treatment data of people with hepatitis C, who receive or received care at one of the participating hepatitis treatment centers, are therefore collected and stored in the SHM database after explicit permission. SHM manages the database and the working group monitors access to and use of the encrypted data.

No data is provided to commercial parties, such as insurers or pharmaceutical companies. The Hepatitis C working group gives permission to the research groups to use specific data for research purposes if they meet the strict legal and ethical conditions. In addition, SHM guarantees the quality of the information distributed.

Treating physicians have access to their treatment center data so they can receive tailored information to increase the level of patient care.

In the Netherlands, 5 hospitals are currently participating: all recognized as hepatitis treatment centers by the Dutch Association of Gastroenterologists (NVMDL) and the Dutch Internists Association (NIV).

  • Erasmus MC
  • Maasstad Ziekenhuis
  • Radboudumc
  • Maastricht UMC
  • UMC Utrecht

The data that is collected is entered into the SHM database by data collectors.

The confidentiality of the data is guaranteed at all times. The identifiable registration data is stored separately from the medical data. The medical data is only stored in under a code number and is therefore not directly traceable.

After given explicit consent, SHM receives the registration data below:

  • date of birth;
  • initials (max. 2 letters);
  • gender;
  • nationality and country of birth;the 4 numbers of your postcode (not letters);
  • data from an earlier registration with SHM, if you have previously attended another HIV treatment centre;
  • hospital registration number.

The registration data will be saved under a unique code number and is therefore not directly traceable to an individual person.

SHM data collectors who collect treatment data in the hepatitis treatment centers and the SHM quality employees, who check the collected data, have signed a confidentiality statement.

All treatment data are stored separately from the registration data under a code number in the database and can therefore not be directly traced back to individual persons.

Treatment data shared with approved research institutions only contain the necessary data for the relevant research where the code number has been replaced by a random code.

You can report the withdraw of your consent to your treating physician if you no longer want the treatment data to be used for scientific research. SHM will then stop collecting your treatment data.

In addition to this right to erasure/to forget, you have other rights that you can exercise with treating physician:

  • Right to object:  this right applies if you think you never gave permission to SHM to use your medical data for scientific research. If you object, SHM will stop collecting your medical data.​​​​​​
  • Right to make  adjustments or edits; you call on this right if your personal data is incorrect or incomplete, by communicating the changes to the hepatitis specialist or nursing consultant. The changed or supplemented personal data in your medical file will be processed by the data collector in the national SHM database.
  • Right to restriction of processing; the right to (temporarily) stop processing your personal data. You can indicate to the hepatitis specialist or nursing consultant that you are withdrawing your permission temporarily. Your medical data will no longer be collected by SHM.
  • Right to inspection; You have the right to view your (personal) data. SHM cannot give you direct access to the national SHM database because your data is collected and stored in encrypted form. However, you can view the data  in your medical file by the hepatitis specialist or nursing consultant.​​​​​​​​​​​​
  • Right to data transfer; you have the right to transfer your data to another party. SHM cannot transfer your data, because your data is encrypted and stored in the national SHM database. However, you can transfer your data from your medical file. ​​​

Our patient information letter contains more information about participating in the national monitoring of hepatitis C infections and how we protect your data if you have given permission for research.

You can also obtain information about SHM from your treating physician or hepatitis nurse.

If you have any questions, please contact us.