Integrating eHealth and Medical Research: The TMF Data Protection Scheme

Building medical research networks is an important part of eHealth. Medical research advances diagnostic and therapeutic knowledge and standards and thereby benefits the patients. On the other hand patient data and samples are among the most sensitive personal informations and must be carefully protected according to rules of ethics and professional discretion as well as national and international data protection laws. The TMF therefore developed a “generic” scheme with variants for the processing of information in networks and biobanks that respects the patients’ rights on privacy. The main methods are: separation of informational powers and responsibilities, peudonymisation, templates for the informed consent, policies, and contracts. A major revision of the scheme, taking into account the experiences from completed or ongoing implementations, is in progress.