data sharing for a learning health system across a german …€¦ · •bioinformatics / medical...
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#IoT4health
Data Sharing for a learning health system across a
German University Hospital Network Prof. Dr. Hans-Ulrich Prokosch
Prof. of Medical Informatics, FAU Erlangen-Nürnberg
CIO, Erlangen University Hospital
Miracum Coordinator
#IoT4health
Motivation
NEW RETINA MD. FALL 2013, 9-12. http://vestrumhealth.com/files/news/articles/New_Retina_MD.pdf
#IoT4health
Motivation
NEW RETINA MD. FALL 2013, 9-12. http://vestrumhealth.com/files/news/articles/New_Retina_MD.pdf
#IoT4health
We need
• coordinated
• secure
• data protected
• governed
access to data
based on a trustworthy framework of technologies and policies
Motivation
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• Findability
• Accessibility
• Interoperability
• Reusability
Motivation
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The German Medical Informatics Funding Scheme
15. November 2015
Conceptual Phase: 8/2016 – 4/2017
7 funded consortia
Define a trustworthy concept for
• coordinated
• secure
• data protected
• governed
access to data
based on a framework of technologies and policies
#IoT4health
The German Medical Informatics Funding Scheme
15. November 2015
Conceptual Phase: 8/2016 – 4/2017
7 funded consortia
10. Juli 2017 Development and Networking Phase
1/2018 – 12/2021
4 consortia: ~ 120 Mio. Euro
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The German Medical Informatics Funding Scheme http://www.medizininformatik-initiative.de/
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The German Medical Informatics Funding Scheme • Networking Data – Improving Healthcare
• Combining disciplines – for individualized medicine
• Using the wealth of data – for improved patient care
• establish technical and non-technical conditions for multi-site synergetic use of data from research and health care at university hospitals
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The German Medical Informatics Funding Scheme
• As a key element data integration centres (DIC) are to be set up and interlinked by the university hospitals and their partners
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The German Medical Informatics Funding Scheme
• As a second key element the development of IT solutions for specific applications (use cases) which will be aided by the multi-site exchange of research and patient care data
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The German Medical Informatics Funding Scheme
today
2018 - 2021
#IoT4health
The German Medical Informatics Funding Scheme • 1 Federal Government
• 16 States • 16 financial resonsibilities
• 16 infrastructure budgets
• 16 different laws on state level
• 16 State Data Protection Acts (vs. Federal DP Law, vs. EU DP Directive)
• > 90% of German University Hospitals
• > 10% of all German Inpatient Cases
Conceptual Phase
adapted from “Medical Informatics Initiative | Central Office| July 5th 2017”
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The German Medical Informatics Funding Scheme
adapted from “Medical Informatics Initiative | Central Office| July 5th 2017”
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The German Medical Informatics Funding Scheme
• WG Interoperability
• WG Data Sharing
• WG Consent
adapted from “Medical Informatics Initiative | Central Office| July 5th 2017”
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The German Medical Informatics Funding Scheme
• WG Interoperability
• Joint Interoperability Key Issues Paper
• Core Data Set
adapted from “Medical Informatics Initiative | Central Office| July 5th 2017”
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The German Medical Informatics Funding Scheme
• WG Data Sharing
• Analysis of Chances/Obstacles for Data Sharing
• Uniform Use and Access Policy Key Issues Paper
• Draft Audit Concept for the DIC
adapted from “Medical Informatics Initiative | Central Office| July 5th 2017”
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The German Medical Informatics Funding Scheme
• WG Consent
• Patient Consent Form Template
• Cooperation with
• German WG of Ethics Committees
• WG of State Data Protection Officers
adapted from “Medical Informatics Initiative | Central Office| July 5th 2017”
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The German Medical Informatics Funding Scheme
• monthly meetings
• Dialogue Forum with healthcare organisations & industry
• yearly general assembly meeting
https://www.uniklinika.de/media/file/13041.17-04-21_Mission_Paper_Vernetzungs-Inititative_Deutsche_Hochschulmedizin.pdf
Mission Paper
Roadmap 2018 - 2021
adapted from “Medical Informatics Initiative | Central Office| July 5th 2017”
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The German Medical Informatics Funding Scheme
today
Supplementary Funding Module 1 young researcher groups
Supplementary Funding Module 2 adding university hospitals to the
funded consortia
2018 - 2021
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The German Medical Informatics Funding Scheme
Medical Informatics in Research and Care in
University Medicine
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MIRACUM . . .
is the largest consortium
• eight University Hospitals and Medical Faculties
• two Universities of Applied Science
• one industrial partner
• across five German States
• associated with four German Health Research Networks (Lung, Cardiovascular and Infectious Diseases, Oncology)
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MIRACUM . . .
is the largest consortium
• eight University Hospitals and Medical Faculties
• comprising ¼ of all German University Hospitals
• handling clinical and research data of more than 10 Mio patients
#IoT4health
MIRACUM . . .
is the largest consortium
• eight University Hospitals and Medical Faculties
• comprising ¼ of all German University Hospitals
• handling clinical and research data of more than 10 Mio patients
• covering a large inpatient catchment area
Map was generated based on in-patient data loaded into the eight MIRACUM DIC
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MIRACUM . . .
brings disciplines together
Bioinformatics
Biostatistics
Translational Research
Clinical Medicine
Medical Informatics
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MIRACUM architecture is based on . . .
Medical Informatics ReusAble eCo-system
of Open source
Linkable and Interoperable software tools – X
MIRACOLIX
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MIRACUM architecture is based on . . .
Medical Informatics ReusAble eCo-system
of Open source Linkable and Interoperable software tools – X
MIRACOLIX
Unfortunately its not
MIRACULIX
it´s not magic
and we are not finished yet
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Translational Research Toolkit
developed at Harvard Medical School
From whom we can learn . . .
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From whom we can learn . . .
11
18
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From whom we can learn . . .
The OHDSI – OMOP Common Data Model
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From whom we can learn . . .
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MIRACUM architecture is based on . . .
Medical Informatics ReusAble eCo-system
of Open source Linkable and Interoperable software tools – X
and applies amongst many others
MIRACOLIX
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MIRACOLIX is . . .
• pragmatic
• modular
• reusable
• open source
• interoperable
• federated
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MIRACUM DIC data flow
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MIRACUM DIC data flow and governance
UAP
DIC Governance Structures
UAC
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MIRACUM Federation
Federated data integration centers based on MIRACOLIX 0.9
Bring the analysis to the data
R-Script SQL-
Statement
Erlangen
Magdeburg
Frankfurt Gießen Freiburg
Mainz Marburg Mannheim
#IoT4health
MIRACUM Federation
Federated data integration centers based on MIRACOLIX 0.9
Bring the analysis to the data
Erlangen
Magdeburg
Frankfurt Gießen Freiburg
Mainz Marburg Mannheim
aggregated results
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
Two clinical research questions:
• Stroke / Thrombectomy Analysis of Guideline Adherence
• Colorectal Cancer Analysis of Treatment Patterns
#IoT4health
MIRACUM Federation
Federated data integration centers based on MIRACOLIX 0.9
Bring the analysis to the data
Erlangen
Magdeburg
Frankfurt Gießen Freiburg
Mainz Marburg Mannheim
aggregated results
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
Two clinical research questions:
• Stroke / Thrombectomy Analysis of Guideline Adherence
• Colorectal Cancer Analysis of Treatment Patterns
submitted to:
#IoT4health
MIRACUM Federation
Federated data integration centers based on MIRACOLIX 0.9
Bring the analysis to the data
Erlangen
Magdeburg
Frankfurt Gießen Freiburg
Mainz Marburg Mannheim
aggregated results
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
Two clinical research questions:
• Stroke / Thrombectomy Analysis of Guideline Adherence
• Colorectal Cancer Analysis of Treatment Patterns
#IoT4health
MIRACUM Cross Consortia Cooperation
Federated data integration centers based on MIRACOLIX 0.9
Bring the analysis to the data
Erlangen
Magdeburg
Frankfurt Gießen Freiburg
Mainz Marburg Mannheim
aggregated results
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
SQL / R
Charité
Vivantes
Ulm
#IoT4health
• IT Support for Patient Recruitment
• Medical Informatics / Clinical Trials
Alerting in Care
• Clinico-molecular Predictive Knowledge Tool
• Biostatistics / Prediction Models / Med. Inf.
From Data to
Knowledge
• Support for Molecular Tumor Boards
• Bioinformatics / Medical Informatics / Precision Medicine
From Knowledge to Action
Use Cases
#IoT4health
• Support for Molecular Tumor Boards • Bioinformatics / Medical Informatics / Precision Medicine
From Knowledge to Action
• Integrating clinical decision support systems for pharmacogenomic testing into clinical routine
Systematic Literature Review
• Review amongst clinicians abut their knowledge about, experience with and attitutudes towards molecular-guided clinical decision making tools
• Analysis of local processes and IT applied to support moleculare tumor boards
Local Status Analysis (eight university hospitals)
Example: Use Case 3
#IoT4health
• Hinderer M, Boeker M, Wagner SA, Lablans M, Newe S, Hülsemann JL, Neumaier M, Binder H, Renz H, Acker T, Prokosch HU, Sedlmayr M. Integrating clinical decision support systems for pharmacogenomic testing into clinical routine - a scoping review of designs of user-system interactions in recent system development. BMC Med Inform Decis Mak. 2017 Jun 6;17(1):81.
From Knowledge to Action
• Hinderer M, Boeker M, Wagner SA, Binder H, Ückert F, Newe S, Hülsemann JL, Neumaier M, Schade-Brittinger C, Acker T, Prokosch HU, Sedlmayr B. The experience of physicians in pharmacogenomic clinical decision support within eight German University Hospitals. Pharmacogenomics. 2017; Jun 8. (Epub ahead of print). doi: 10.2217/pgs-2017-0027.
Systematic Literature Review
• Hinderer M, Boerries M, Haller F, Wagner S, Sollfrank S, Acker T, Prokosch HU, Christoph J. Supporting Molecular Tumor Boards in Molecular-guided Decision Making - the Current Status of Five German University Hospitals. Stud Health Technol Inform. 2017;236:48-54.
Local Status Analysis (eight university hospitals)
Example: Use Case 3
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MIRACUM Team Erlangen and MIRACUM Steering Board
Förderkennzeichen: 01ZZ1801A
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MIRACUM International Scientific Advisory Board
George Hripcsak
Richard Frackowiak
Kai Uwe Heitmann
Stefan Schulz
Charles Sawyers
Lisa McShane
Zak Kohane
Thank you very much for your attention
Förderkennzeichen: 01ZZ1801A