Under the Medical Informatics Initiative funding scheme, four consortia of German university hospitals, together with further partners from the academic and private sector, work towards a common infrastructure for the collection, sharing and use of clinical data. The ultimate goal is the learning health care system: the idea is to collate the vast amount of data from clinical care and research and make them available for research.
The Charité – Universitätsmedizin Berlin is partner of the HiGHmed consortium. HiGHmed involves a work package on the ethical, political, and social issues that arise in the context of collecting linking, and using patient data in medical research and health care. In order to ensure compliance with widely accepted ethical standards of medical research, policies and governance instruments need to recognise the partucualrities of Big Data research.
The research projects conducted in the group from Daniel Strech (Berlin Institute of Health and Hannover Medical School) focus on practice-oriented questions, e.g. practice evaluation of consent documents and the development of concepts and practical tools for data sharing. Moreover, ongoing discussions on evidence and quality standards for Big Data-based research projects are subject of empirical and conceptual studies.
- Strech, Daniel (2018): Normative Governance der Big Data Forschung. In: Forschung: Politik - Strategie - Management, 2+3/2018, S. 53-58