Medical practices and regional hospitals are central facilities for the medical care of patients. However, large amounts of medical data from patient care are also generated in these settings outside of research-oriented hospitals. In the ProgressHub DISTANCE, the interoperable data exchange is extended to medical facilities of regional care and the benefits for patients, medical professionals and science are demonstrated in a clinical application.
Many outpatients suffer from psychological and physical complaints known as Post Intensive Care Syndrome (PICS) during the weeks and months after prolonged intensive care treatment, for example as a result of a life-threatening respiratory or circulatory failure. After the inpatient discharge, this often leads to a significant loss in their quality of life. In their everyday life, patients are confronted with problems due to persistent mental, cognitive, physical and/or psychological limitations and may no longer be able to take care of themselves.
In the DISTANCE ProgressHub, those affected receive the patient-oriented PICOS App, which regularly informs about the individual state of health and supports medical self-care in everyday life. The app bundles information on the mental and physical condition and at the same time generates large amounts of data that can improve the limited data on the long-term course of critical illnesses. In the future, the quality of treatment in this group of patients can be optimized through early intervention and repeated hospital admissions can be avoided.
The stronger networking of university hospitals, regional hospitals and resident doctors means that cross-sector patient data is collected at different times during treatment. In the long term, the resulting data will be anonymized, merged and be available for secondary data analysis and research purposes. This results in a structured overview of the most diverse electronic patient data records from all relevant areas of health care. Using data management and data modeling, previously unknown relationships and dependencies of various diseases can be identified. Clinicians, researchers, computer scientists and other health professionals can use the collected data to optimize clinical conditions and treatment processes for specific patient groups using artificial intelligence methods.
DISTANCE is one of the six Digital Health ProgressHubs that will start in mid-2021. The Federal Ministry of Education and Research (BMBF) is providing circa 50 million euros for this project through 2025. The task of the ProgressHubs is to incorporate the pioneering work of the Medical Informatics Initiative (MII) on digitization in medicine from the university clinics – initially in pilot projects – into all areas of the health system. The starting point of a hub is the Data Integration Center (DIC) of an university clinic. These centers are currently being set up as IT infrastructures at almost all university hospitals as part of the Medical Informatics Initiative. These networks with regional partners – including hospitals, medical practices, rehabilitation and care facilities as well as emergency services. Research institutions and health insurance companies are also partners of the hubs.