Fraunhofer Institute for Software and Systems EngineeringThe project "DISTANCE - Digital Smart Hub for Advanced Connected Care" deals with the outpatient follow-up of patients discharged from intensive care treatments for the prevention and therapy support of Post Intensive Care Syndrome (PICS). Affected patients suffer from impairments beyond their intensive care stay, which can lead to a loss of quality of life. The PICOS app (Post Intensive Care Outcome Surveillance app) developed as part of DISTANCE is therefore designed to enable patients to monitor and document their health conditions and actively participate in their recovery process. At the same time, a so-called Digital Hub is being established within the framework of DISTANCE, in which treatment data from regional outpatient and inpatient care structures and the data collected via the PICOS app, in short PROMs (Patient-Reported Outcome Measure), are aggregated in a central system for research purposes. The Digital Hub serves to extend interoperable data exchange to regional healthcare providers and to facilitate access to Real World Data for research in accordance with the Medical Informatics Initiative (MII).
DISTANCE
Digital Smart Hub for Advanced Connected Care
The challenge
To enable cross-sector exchange of care data and PROMs for research purposes, an integrative, digital infrastructure is needed to which applications such as the PICOS app, as well as regional healthcare providers such as hospitals or GP practices, can connect independently of the local IT systems. In order to make the data not only accessible but also usable for research and further care, a data structure based on international and national interoperability standards is also required.
Our contribution
Within DISTANCE, Fraunhofer ISST is responsible for defining the overall technical architecture, interfaces and processes that ensure interaction between the components of the Digital Hub as well as with the existing MII infrastructure. In particular, the connection of the Digital Hub to the German Research Data Portal Health using the Data Sharing Framework is the subject of our work.
Results
The result of DISTANCE is a symbiosis of solutions to various sub-problems. Through the PICOS app, healthcare providers are able to choose more individualized treatment approaches and prevent re-hospitalizations through early intervention. Additionally, the long-term documented disease trajectories provide real value to clinical research. The digital hub being created in DISTANCE will facilitate the provision of data for research and also serve as a low-threshold data exchange between (regional) healthcare providers. DISTANCE aims to demonstrate the added value of such data exchange for all parties involved, i.e. patients, healthcare professionals and researchers, and thus to extend and further develop the model of data sharing to non-university institutions.
Partners
- Uniklinik RWTH Aachen, Klinik für Operative Intensivmedizin und Intermediate Care
- Universitätsklinikum Jena, Institut für Medizinische Statistik, Informatik und Datenwissenschaften
- Universitätsklinikum Leipzig
- Universität Leipzig mit LIFE Management Cluster
- Private Universität Witten/Herdecke gGmbH, Fakultät für Gesundheit/Department für Humanmedizin, Witten
- St. Franziskus Stiftung, Münster
- Deutsche Gesellschaft für Telemedizin e.V., Berlin
- Evangelisches Krankenhaus Mettmann GmbH
- Lukas Krankenhaus Bünde gGmbH
- Klinikum Westmünsterland GmbH
- Katholische Hospitalgesellschaft Südwestfalen gGmbH
- Krankenhaus Düren gGmbH
- St. Marien Hospital Düren gGmbH
- Universitätsklinikum Bonn, Institut für Hausarztmedizin
- Heinrich-Braun-Klinikum Zwickau gGmbH
- Sophien- und Hufeland Klinikum Weimar gGmbH
- Klinikum Chemnitz gGmbH
- Zentrum für Telematik und Telemedizin GmbH
Funding
- Sponsor: Federal Ministry of Education and Research (BMBF)
- Funding code: 01ZZ2104E
- Duration: 07/2021 – 06/2025
