Investigating Ethical, Legal, and Socio-Technical Barriers of Medical Data Donation and Developing a Concept to Address Them - A Research Protocol

摘要

Medical data are being generated in large quantities. However, these data are rarely used beyond their primary purpose. Big data methods to medical data offer the opportunity to transform healthcare. The healthcare industry has been a lot less successful than other industries in applying these new tools. Main reasons are privacy concerns and the fact that medical data in Germany are scattered across institutions. The method of data donation can offer a solution. The first aim of the proposed Medical Data Donation Enabler (MADE) project is to investigate ethical, legal and socio-technical barriers to data donation. The second aim is to develop a concept of a medical data donation process model that addresses the barriers by providing a data donation process model. The process model concept created through MADE could be provided for this purpose.