CC BY-NC-ND 4.0 · Methods Inf Med 2018; 57(S 01): e82-e91
DOI: 10.3414/ME17-02-0025
Focus Theme – Original Articles
Schattauer GmbH

MIRACUM: Medical Informatics in Research and Care in University Medicine

A Large Data Sharing Network to Enhance Translational Research and Medical Care
Hans-Ulrich Prokosch
1  Chair of Medical Informatics, Department of Medical Informatics, Biometrics and Epidemiology, Friedrich-Alexander-University Erlangen-Nürnberg, Erlangen, Germany
,
Till Acker
2  Institute of Neuropathology, Justus-Liebig-University Giessen, Giessen, Germany
,
Johannes Bernarding
3  Chair of Medical Informatics, Institute for Biometry and Medical Informatics, Otto-von-Guericke-University Magdeburg, Magdeburg, Germany
,
Harald Binder
4  Institute of Medical Biostatistics, Epidemiology and Informatics, University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany
5  Institute of Medical Biometry and Statistics, Medical Faculty and Medical Center – University of Freiburg, Freiburg, Germany
,
Martin Boeker
5  Institute of Medical Biometry and Statistics, Medical Faculty and Medical Center – University of Freiburg, Freiburg, Germany
,
Melanie Boerries
6  Institute of Molecular Medicine and Cell Research and Comprehensive Cancer Center Freiburg (CCCF), University Medical Center, Faculty of Medicine, University of Freiburg; German Cancer Research Center (DKFZ), Heidelberg and German Cancer Consortium (DKTK) partner site Freiburg, Freiburg, Germany
,
Philipp Daumke
7  Averbis GmbH, Freiburg, Germany
,
Thomas Ganslandt
1  Chair of Medical Informatics, Department of Medical Informatics, Biometrics and Epidemiology, Friedrich-Alexander-University Erlangen-Nürnberg, Erlangen, Germany
8  Department of Biomedical Informatics, University Medicine Mannheim, Ruprecht-Karls-University Heidelberg, Mannheim, Germany
,
Jürgen Hesser
9  Experimental Radiation Oncology Department, University Medical Center Mannheim, Central Institute for Scientific Computing (IWR), Central Institute for Computer Engineering (ZITI), Heidelberg University, Mannheim, Germany
,
Gunther Höning
10  Department of Information Technology, University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany
,
Michael Neumaier
11  Chair for Clinical Chemistry, Medical Faculty Mannheim of Heidelberg University, Mannheim, Germany
,
Kurt Marquardt
12  University Hospital of Giessen and Marburg, Giessen, Germany
,
Harald Renz
13  Chair for Clinical Chemistry, Philipps University Marburg, Medical Director of the University Clinic Marburg, Marburg, Germany
,
Hermann-Josef Rothkötter
14  Institute of Anatomy, Otto-von-Guericke-University Magdeburg, Dean of the Medical Faculty, Magdeburg, Germany
,
Carmen Schade-Brittinger
15  Chair of the Coordinating Centre for Clinical Trials, Philipps University Marburg, Marburg, Germany
,
Paul Schmücker
16  University of Applied Sciences Mannheim, Institute for Medical Informatics, Mannheim, Germany
,
Jürgen Schüttler
17  Department of Anesthesiology, University of Erlangen-Nürnberg, Dean of the Medical Faculty, Erlangen, Germany
,
Martin Sedlmayr
1  Chair of Medical Informatics, Department of Medical Informatics, Biometrics and Epidemiology, Friedrich-Alexander-University Erlangen-Nürnberg, Erlangen, Germany
18  Institute of Medical Informatics and Biometrics, Carl Gustav Carus Faculty of Medicine, Technische Universität Dresden, Dresden, Germany
,
Hubert Serve
19  Department of Hematology and Oncology, University Hospital Frankfurt, Goethe University, Frankfurt am Main, Germany
,
Keywan Sohrabi
20  Faculty of Health Sciences, University of Applied Sciences – THM, Giessen, Germany
,
Holger Storf
21  Medical Informatics Group, University Hospital Frankfurt, Goethe University, Frankfurt am Main, Germany
› Author Affiliations
MIRACUM is funded by the German Federal Ministry of Education and Research (BMBF) within the Medical Informatics Funding Scheme (FKZ 01ZZ1606A-H).
Further Information

Publication History

received: 22 December 2017

accepted: 13 April 2018

Publication Date:
17 July 2018 (online)

  

Summary

Introduction: This article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. Similar to other large international data sharing networks (e.g. OHDSI, PCORnet, eMerge, RD-Connect) MIRACUM is a consortium of academic and hospital partners as well as one industrial partner in eight German cities which have joined forces to create interoperable data integration centres (DIC) and make data within those DIC available for innovative new IT solutions in patient care and medical research.

Objectives: Sharing data shall be supported by common interoperable tools and services, in order to leverage the power of such data for biomedical discovery and moving towards a learning health system. This paper aims at illustrating the major building blocks and concepts which MIRACUM will apply to achieve this goal.

Governance and Policies: Besides establishing an efficient governance structure within the MIRACUM consortium (based on the steering board, a central administrative office, the general MIRACUM assembly, six working groups and the international scientific advisory board), defining DIC governance rules and data sharing policies, as well as establishing (at each MIRACUM DIC site, but also for MIRACUM in total) use and access committees are major building blocks for the success of such an endeavor.

Architectural Framework and Methodology: The MIRACUM DIC architecture builds on a comprehensive ecosystem of reusable open source tools (MIRACOLIX), which are linkable and interoperable amongst each other, but also with the existing software environment of the MIRACUM hospitals. Efficient data protection measures, considering patient consent, data harmonization and a MIRACUM metadata repository as well as a common data model are major pillars of this framework. The methodological approach for shared data usage relies on a federated querying and analysis concept.

Use Cases: MIRACUM aims at proving the value of their DIC with three use cases: IT support for patient recruitment into clinical trials, the development and routine care implementation of a clinico-molecular predictive knowledge tool, and molecular-guided therapy recommendations in molecular tumor boards.

Results: Based on the MIRACUM DIC release in the nine months conceptual phase first large scale analysis for stroke and colorectal cancer cohorts have been pursued.

Discussion: Beyond all technological challenges successfully applying the MIRACUM tools for the enrichment of our knowledge about diagnostic and therapeutic concepts, thus supporting the concept of a Learning Health System will be crucial for the acceptance and sustainability in the medical community and the MIRACUM university hospitals.