DISTANCE Project Results
Using digital solutions to improve regional patient care
Long-term data from former intensive care patients collected for the first time
In the DISTANCE project, structured longitudinal data from patients was digitally collected for the first time and made available across sectors to all healthcare providers involved. To generate longitudinal data courses, data from intensive acute care and the subsequent rehabilitation phase was recorded. Starting with enrollment in the hospital, the patients’ health status was documented for up to one year after discharge. More than 200 patients independently entered their health-related data into the PICOS App. The data entered into the app is currently being evaluated. Artificial intelligence is helping to identify risks and signs of deterioration at an early stage and to predict the course of disease after intensive care treatment more accurately.
Using routine care data across facilities and sectors
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.
Supporting patients’ medical self-care with the PICOS App
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.
Sustainability through the use of existing structures
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.
