The Department of Clinical Research operates as an independent Data Access Committee for researchers at the University Hospital Basel (USB). The main task of this independent committee is to protect sensitive research data and at the same time to publish it according to the FAIR principles ("Findable", "Accessible", "Interoperable", "Re-usable"). Instead of passing on research data in anonymised form, the DAC collects, stores and manages it. Only metadata are published, which researchers use to find the desired data set in order to be able to submit a request to the DAC for its transfer. The DAC is thus able to check whether legal requirements for further use are met and only passes on research data to third parties in justified cases.
"In this way, the DAC makes it possible to make research data available for research without publishing the data itself," comments Constantin Sluka, PhD, head of the DKF Data Science team." In doing so, we also comply with both data protection and the principle of Open Research Data.
The process of data transfer takes place as follows:
Research data is received by the DKF and stored on a secure server in USB. The DKF then publishes the metadata on a publicly accessible repository, a central data store (https://dataverse.harvard.edu/dataverse/dkf).
Applications for the further use of research data can be submitted via the DKF contact form and should include the following documents:
- Concrete research proposal
- Approval by the Ethics Committee (if applicable)
- Parameter list of the requested variables
- Definition of the subgroup from which data are requested (if applicable)
The DAC evaluates each individual application. If it is approved, the requested data is extracted by the DKF and a data codebook is created, which is essential for secondary data analysis. Finally, the applicants sign a data transfer and useage agreement committing themselves to the following:
- to use the research data only for the approved research purpose
- to follow good scientific practice
- to offer co-authorship or cite the authors of the research project from which the data originate, in accordance with the guidelines of the University of Basel,
- optionally register their research project with clinicaltrials.gov
After signing this agreement, the DKF will transfer the requested data to the applicants via a secure connection.