How do we ensure privacy?

None of the data held in Palga’s database can be traced back to individual patients. Personal data submitted by the labs is pseudonymised twice: before and after it is added to the database. ZorgTTP, a Trusted Third Party, performs this pseudonymisation on Palga’s behalf.

Palga assessment framework

All data requests submitted to Palga are reviewed by the Scientific Council, the Data Protection Officer and the Privacy Committee. The Scientific Council assesses requests on their scientific merits.

Meanwhile, the Data Protection Officer and the Privacy Committee check to ensure compliance with existing data protection legislation (Medical Treatment Contracts Act (WGBO) and the GDPR).

The Scientific Council and the Privacy Committee are not ethical review committees. Researchers themselves are responsible for having their studies assessed by an ethical review committee at the institution where they are employed.

Cohort requests

In the case of cohort requests, data from Palga’s database is provided based on pseudonymised information concerning individuals or patients who participated in a scientific study. Researchers will only receive data if they can demonstrate compliance with all the applicable rules and regulations. Any personal data provided in connection with cohort requests is encrypted by ZorgTTP. This ensures that Palga does not receive any data that can be traced back to individual patients, as stipulated by the GDPR.

If patients object to their medical information being used in scientific research during the course of their treatment, their data is not included in Palga’s database. Data can also be removed retroactively. See the patient leaflet for further details.

Patient privacy

Pathology test: how is your data handled?

Patients who want to learn more about pathology tests and the use of data can consult Palga’s patient leaflet, copies of which are available at the labs. The leaflet is also available for download in English, Turkish and Arabic.

Patient consent

UDPS has two sections for recording patient consent:

For the use of data for scientific research
For the use of residual tissue

Ticking a section displays the possible options. If a patient chooses to restrict consent, their lab data is automatically removed from the national database.

A lab can only delete data from its own pathology tests. If a patient wants data from multiple labs to be deleted, they must contact each lab separately.

Palga is not able to delete patient data.

The storage of human tissue by pathology labs

Palga only manages pathology report excerpts. Tissue samples collected during the diagnostic process are stored at the pathology labs. Palga can, however, act as an intermediary between labs and researchers.

The Dutch Pathological Society has a patient leaflet on the storage and retention of tissue samples by pathology labs.

Consenting to research involving your residual tissue

The Dutch Pathological Society also has a patient leaflet on the use of tissue samples.

The above leaflets were created with the assistance of various patient organisations: the Dutch Patient Federation, the Association of Cooperating Parent and Patient Organisations (VSOP) and the Dutch Federation of Oncological Patient Organisations (NFK).

In general, requests for links with medical registries and tissue samples will be processed if the patient information indicates that the patient has given informed consent.

Go to the request procedure and the Palga Request System.