Services Offered by TrustMe.RUB
(De-)Pseudonymization
At TrustMe.RUB, personally identifiable data (IDAT) of patients are replaced with pseudonyms to protect their identities. These pseudonyms are stored in a central list, which is the only place where the linkage between patients and their pseudonyms can be made. This ensures that no one can trace back the data without access to this list. The pseudonyms can be created and managed either manually or automatically at TrustMe.RUB:
Automated: A system generates and manages pseudonyms automatically. A special transfer token enables the secure transmission of the pseudonymized data, without any party knowing all the information about an individual.
Manual: Similar to the automated method, but the creation and management of pseudonyms is done manually by TrustMe.RUB. The responsibility for the transfer of data lies with the involved parties.
For each research project, patient data are doubly pseudonymized before being exported. This means that a unique pseudonym is generated for each research project, preventing the merging of data from a single individual across multiple projects. This ensures unlinkability and provides additional protection for patient data.
If necessary, the data can be reverted to its original form and depseudonymized. This is only possible under specific legal conditions and is carried out via TrustMe.RUB’s central mapping list. The tool used for these processes is the Generic Pseudonym Administration Service (gPAS®), a software developed by the University Medicine Greifswald, which generates and manages pseudonyms. It also enables the conversion of pseudonyms back into original data, if needed.
Consent Management
Another key responsibility of TrustMe.RUB is consent management. Here, patient consents are managed and can be viewed centrally. The consent process determines which data can be made available for research purposes. In addition to consents, revocations can also be managed. Consent management can be carried out manually or, depending on the project, automated. For consent management, the tool used is the Generic Informed Consent Service (gICS®), a software developed by University Medicine Greifswald. This tool enables both manual entry and automated retrieval of your consent declaration.
Revocation
Patients have the right to partially or fully revoke their consent for the use of their data. In the case of a partial revocation, consent is withdrawn only for specific aspects, such as re-contacting the patient. In the event of a full revocation, patients can decide whether their data should be fully deleted or anonymized. If data deletion is requested, TrustMe.RUB, in collaboration with its partners, will initiate the deletion process. A portion of the personal data will remain stored within TrustMe.RUB to document the revocation and the deletion confirmation. The revocation process, like consent management, is handled through the gICS® software tool.
Unique Identification (Record Linkage)
T o uniquely assign medical data (MDAT), specific identifiers are used. These identifiers are often only unique within a single system or clinic, which means a patient's data may have different identifiers across various clinics or systems. TrustMe.RUB, for example, is responsible within the framework of the research data infrastructure project for merging data from different UK RUB clinics and linking them with a cross-system identifier known as the Master Patient Index Identifier (MPI-ID). This process should be applied whenever data from multiple locations are being combined. Technically, this process is implemented through the Enterprise Identifier Cross-Referencing (E-PIX®) tool developed by University Medicine Greifswald.
Software Used
In collaboration with the Independent Trustee Office of University Medicine Greifswald (UMG), specialized tools are employed to fulfill the tasks of TrustMe.RUB. These tools ensure secure and efficient management of research data.