In 2007 Robin Wilfert was diagnosed with Ewing's sarcoma, a rare malignant bone cancer. Robin fought for one year - against cancer, chemotherapy and against the dated health system. It took heavy personal initiative on his part to gain an understanding of his own body, his illness and get access to the associated personal data. Because the data is everywhere, but not with the person who should have it: the owner, the patient.
Robins fight ended with the diagnosis "healed" - but in the process he experienced how confusing our health system is and how frightening ignorance and a lack of information can be for the patient.
"With complex diseases and treatment processes the patient has nearly no overview. The chaos starts as soon as multiple doctors, practices and clinics get involved." says Robin in a conversation with Alexander Fischer, managing director of the state-sponsored project for networked medicine and improvement of health competence, Gesundheit Billstedt/Horn. "I often got the feeling that the left hand didn't know what the right hand was doing." he adds.
Alexander Fischer agrees: "Patients, but also medical staff need support so that we can improve health competence. To achieve this, communication and data exchange in the entire system must be greatly improved. We have islands for health data everywhere: the medical practice, most hospitals, health insurance companies or apps. The data is already available. "But how do you connect all the data to help patients recover and doctors work?"