Wie Patient:innen Piloten ihrer Erkrankung werden

Abstract

‚Patients need to know what the data is for, what the data means for them personally and, of course, for other patients,‘ explained Prof. Tjalf Ziemssen, MD, Director of the Centre for Clinical Neurosciences and Deputy Clinic Director of the Clinic and Polyclinic for Neurology at the Centre for Clinical Neurosciences at the Neurological University Hospital Dresden at the Roche Pharma DKVF Symposium entitled ‚Data use as an end in itself or for the benefit of the patient?‘. According to Ziemssen, it has often been the case in the past that although attempts have been made to obtain more and more data from patients in order to conduct research and introduce innovations, this is usually done without the patient benefiting directly or being able to understand what the data means for them personally. As a negative example, Mr Ziemssen cited the electronic patient file, which would have no structure that the patient would not be able to deal with operationally. The concept of the ‚digital twin‘, which he propagates, is different (see interview page 22 ff).