In DISTANCE, structured, longitudinal patient data was digitally recorded for the first time and made available to regional healthcare providers across sectors. For this purpose, data from intensive care and subsequent rehabilitation was collected. More than 200 patients entered their health-related data independently into the PICOS App for up to one year after discharge. This data is currently being evaluated using artificial intelligence to identify risk factors and deterioration trends early on and predict disease progression more accurately after intensive care treatment.
The Digital Hub DISTANCE connected nine regional healthcare providers — such as medical practices and hospitals — with the existing MII infrastructure. The goal was to make routine data from regional care usable across sectors and to provide it in anonymized form for research. To achieve this, the so-called Digital Hub created a scalable, cross-sector, and interoperable infrastructure linking regional care providers with university institutions. This demonstrated not only feasibility but also the concrete added value for medical research and healthcare.
After extended stays in intensive care units, Post-Intensive Care Syndrome (PICS) often leads to physical, mental, and emotional limitations in quality of life. The PICOS App supported around 200 former intensive care patients in their health-related self-care following discharge. Using the app, users were able to regularly document their health and well-being. This continuous data helped both the patients and their treating physicians gain an overview of their current health status. These longitudinal data are of great and lasting importance both for clinical research and for improving clinical conditions and treatment processes.
DISTANCE optimized both regional patient care and the integration of medical data into the core data set of the Medical Informatics Initiative (MII). Within the MII, the technical foundations for a digital infrastructure were created to network previously unused patient data from routine care nationwide and make it usable for medical research. In this way, diseases can be treated more quickly and effectively in the future. As part of the DISTANCE project, the rollout of the technical MII concept to regional hospitals and outpatient physician networks was successfully tested.
The Digital Hub DISTANCE was funded by the German Federal Ministry of Research, Technology and Space (BMFTR) from 01 June 2021 to 30 June 2025 with 10.9 million euros. The project was extended until 30 September 2025 on a cost-neutral basis and continued as DISTANCE:PRO from 01 Oktober 2025. An overview of the project partners from DISTANCE can be found here.
Many former intensive care patients suffer from PICS for a long time. The new PICOS app supports them in their everyday lives and provides data for research. Two experts report on the study.
The BMBF-funded Digital Hubs were launched almost a year ago. In this interview, Prof. Marx and Dr. Molinnus provide an overview of the SMITH Consortium's DISTANCE Hub.