Distributed Storage and Encryption
The so-called PID Generator of the TMF is responsible for identity management in collaborative projects for medical research. Here, person-identifying data is centrally managed, and non-trivial first-order pseudonyms are generated and issued. © TMF
On December 15, 2008, TMF will host a public workshop in Berlin on the management of patient IDs in medical research.
Nine years ago, a reader of the computer magazine c’t stared incredulously at the screen and rubbed his eyes. When looking up medical terms through an internet search engine, he found the diagnosis report of a patient with name and date of birth from a Munich hospital. A serious breach of doctor-patient confidentiality and data protection law. The case became known, and several hundred other data sheets with blood analyses of patients from this hospital were freely accessible on the internet. A scandal for the clinic and a catastrophe for data protection officers.
To avoid similar mishaps in clinical research, today, a number of anonymization and pseudonymization procedures for patient data are used, which work with the creation and management of IDs (= identification codes). Especially in medical collaborative research projects, patient data is stored long-term to also be available for the investigation of still unknown issues today. As long as the data is anonymized and cannot be traced back to specific patients, there are no data protection problems.
However, it is sometimes necessary to assign data records from multiple examination time points to each other or to subsequently relate data to a specific patient, for example, if later insights for individual treatment have emerged from it. For such cases, an elaborate pseudonymization concept is required, which often also needs to be coordinated with the various data protection commissioners for distributed data collection.
Use cases, current concepts, and solutions of pseudonymous ID management will be presented on December 15th at the public workshop "ID Management" of the TMF. The workshop will also address technical issues, approaches to their solution, and international standardization processes. The workshop is chaired by Prof. Dr. Klaus Pommerening from the Pediatric Oncology and Hematology Competence Network and TMF Managing Director Sebastian Claudius Semler. Registrations are possible via email.
Date: December 15, 2008
Time: 10 am – 5 pm
Location: Kaiserin-Friedrich-Stiftung, Robert-Koch-Platz 7, 10115 Berlin
Further Information
