GDSI Open Data

Summary:

When it comes to the patient-level data that was collected using the direct-entry form, MSIF and ECF act as joint controllers of this data. The memorandum of understanding (MoU) between MSIF and ECF clearly states “ECF and MSIF explicitly agree that all results obtained or generated during the Project shall be made publicly available, in an open source environment” MSIF and ECF agreed to release the patient-level data collected using the direct entry form in the public environment as an open dataset. UHasselt has significant expertise in tackling technical, legal and ethical requirements to release GDPR sensitive data in an open source environment. Therefore, ECF and MSIF choose to collaborate with UHasselt on this topic.

As a first step, UHasselt processed the data in order to anonymize the data to the largest extent possible (the “Processed Data”).

Afterwards the data was transferred to a trusted third party to perform a Small Cell Risk Analysis. The SCRA report stated that "Based on the results of the quantitative SCRA, we conclude that no further action is needed in order to reduce the impact of potential disclosure of any sensitive information.". Therefore, the data was released as an open dataset.

Role of UHasselt:

• Project coordination
• Data anonymization

Scientific paper was submitted and currently under review. The dataset is released as an open dataset and can be found here.