Data trustee for sovereign management and effective use of medical data in sleep research

Context

The clinical data from diagnostics and studies, which are available in large numbers in sleep laboratories, are usually not earmarked for secondary use or consent is missing. Thus, the use of these data in the context of medical research is often impossible or only in a highly anonymized form, which weakens their potential for use and prevents innovations. Data trustees are seen as a central element in solving these problems, as they act as a neutral intermediary to reconcile the needs of data providers and data users. This work aims to develop and test a transparent and trustworthy data fiduciary model that allows the voluntary and sovereign sharing of clinical data by individuals to be safely implemented and efficiently used in medical research.

Tasks

• Research in the field of data trustees and their application in health care using the example of sleep research
• Consideration of identity, data, process and access management required for this purpose
• Conception of a technical realization of subcomponents of the data trustee (e.g. a matching service of terms of use and intentions, services for transparency and traceability of data usage etc.) and the prototypical implementation of this concept
• Evaluation, improvement and further development of this prototype

Requirements

• Independent thinking and working
• High level of self-motivation and commitment
• Studies with technical and/or scientific relation
• Ideally practical experience with web technologies and programming languages (JavaScript, TypeScript, Java, C, Python, etc.)