Dr. Horst Pichler
Title of Presentation
Connecting Distributed Clinical Patient Records with Samples in Biobanks
Date and Place
Dr. Horst Pichler is engaged in BBMRI.at (Biobanking and BioMolecular resources Research Infrastructure Austria) and deals with problems of standardization and harmonization of data management in biobanks. After his PhD in technical sciences he specialized on different aspects of systems integration, participated in several national and international research projects, authored many international publications, consulted large integration projects, managed development teams, and helped shaping applications to readiness for marketing.
Biobanks are infrastructures supporting medical research by providing biological material (samples) for scientific studies. The usefulness of the biological material increases considerably with the annotation of the biological samples with quality controlled data about the donator. Augmenting the donation of biological material with donation of personal data is a strong desideratum, where in particular the completeness of the data which might be distributed over several health care providers is a difficult problem in countries where health records are not kept in a centralized way. Distributed access to these clinical records for the purpose of patient treatment like the Austrian ELGA system could open new possibilities for individuals for donating their data for medical research but involves many critical ethical, legal and societal issues. We discuss here the technical issues as a contribution to the overall discussions. In particular we explore technical and organizational options for linking such distributed clinical records with biobank samples in a tightly controlled way enforcing the data ownership of the data donor and discuss usage and access patterns with their technical requirements and their implications for data security, privacy and quality control.