Information resource for patients unveiled at dialogue event

Berlin, 09.09.2020. The mission of the Medical Informatics Initiative (MII) of the Federal Ministry of Education and Research (BMBF) is to make data captured during routine healthcare treatment available for medical research. This will enable improvements in treatment, diagnostics and prevention. And it requires informed consent on the part of patients to the use of their data for research purposes. With immediate effect, patients are now asked upon admission to university hospitals whether they agree to their treatment data being used, in pseudonymised form, for medical research. Against this backdrop, MII has developed a video which clearly explains and visualises the goals of the nationwide initiative and the in-hospital consent process.

How do MII researchers use data in their work? What data are involved, how long are they stored and who uses them? How is my privacy protected, and what happens if I refuse consent? The animated video answers these and other questions in an easy-to-understand and entertaining way. It clearly explains the consent process and its consequences to patients, ensures transparency and helps them to better understand the subject of consent.

The video was published within the scope of an online dialogue event with patient organisations hosted by MII in September 2020. Gerlinde Bendzuck, chair of Landesvereinigung Selbsthilfe Berlin, stated: “Comprehensive and easily understood guidance for patients is the prerequisite for their informed consent. The video is designed to perform a supporting role, in addition to the information document, when discussing consent with patients.”

The video will be made available to all German university hospitals participating in MII for on-site use as an information resource for patients. It is available in German and English, and has subtitles.

 

To the video:
 

To the video on Youtube

Media Contact:

Sophie Haderer, Tel.: 030 − 22 00 24 730, presse@medizininformatik-initiative.de

 

Background
 

The aim of the Medical Informatics Initiative (MII) is to enhance research and patient care through innovative IT solutions. These will enable the sharing and use of data from healthcare and from clinical and biomedical research across multiple entities and sites. The German Federal Ministry of Education and Research (BMBF) is investing a total of 160 million euros in the initiative through 2021. Within the scope of four consortia – DIFUTURE, HiGHmed, MIRACUM and SMITH – all German university hospitals and medical centres at over 30 locations are cooperating with research institutions, businesses, health insurers and patient representatives. Their mission is to enable the use of research findings to the direct benefit of patients. At the same time, priority is given to robust data protection and security.

The Berlin-based coordination office, operated by TMF (Technology, Methods and Infrastructure for Networked Medical Research) with MFT (German Association of Medical Faculties) and VUD (German Association of Academic Medical Centers), is responsible for managing cooperation within MII at national level.