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Smart4Health is funded by the European Commission under contract 826117
Building today a healthier tomorrow
Citizen‐centred EU‐EHR exchange for personalized health
Dr. Attila WohlbrandtPotsdam
Smart4Health is funded by the European Commission under contract 826117
Big Idea ...to EU-wide, active, continuouscitizen-generated health data
and interoperable electronic health records
From passive, limited anddisconnected data collection
Smart4Health
Smart4Health is funded by the European Commission under contract 826117
Problems & opportunities
3
Smart4Health is funded by the European Commission under contract 826117 4
Digital‐Health‐Index measures• Policy activity • Technical implementation and readiness
• Actual use and exchange of data
Diverse Europe
Thiel, R., Deimel, L., Schmidtmann, D., Piesche, K., Hüsing, T., Rennoch, J., … Stroetmann, K. (2019). Gesundheitssystem‐Vergleich Fokus Digitalisierung #Smart Health Systems Digitalisierungsstrategien iminternationalen Vergleich Teil I: Internationales Benchmarking und Digital‐Health‐Index Teil II: Erfolgskriterien und Nutzungsgrade digitaler Anwendungen. Retrieved from https://t.co/HUK30Ytx4f
Smart4Health is funded by the European Commission under contract 826117 5
Different cultures
Diverse Europe
Photo by Pixabay from Pexels
Smart4Health is funded by the European Commission under contract 826117 6
• E.g. Hospital Information System Hospital Information System
Existing systems focus on data
Photo by EVG photos from PexelsPhoto by Martha Dominguez de Gouveia on Unsplash
Bild von Robin Higgins auf Pixabay
Smart4Health is funded by the European Commission under contract 826117
Citizens carry around their health data in files or not at all
7
Smart4Health is funded by the European Commission under contract 826117
Citizens cannot access their data or do not know that they could
8
Smart4Health is funded by the European Commission under contract 826117
Wearable data is (mainly) proprietary
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Bild von WikimediaImages auf PixabayBild von OpenClipart‐Vectors auf Pixabay
Smart4Health is funded by the European Commission under contract 826117 10
• E.g.• Machine learning• Genome analysis• Clinical decision support
• Where to get the data from?
• How to provide data for science
• Data protection
Data intensive research
Smart4Health is funded by the European Commission under contract 826117
www.smart4health.eu
11
Smart4Health is funded by the European Commission under contract 826117
www.smart4health.eu
12
Leitmotifs
I can help others by donating data
I am supported managing my own health
Smart4Health is funded by the European Commission under contract 826117 13
• Provide secure access to an interoperable infrastructure • To all citizens throughout Europe • To manage own health information
• Electronic Health Record,• Wellbeing and fitness • Actionable Omics information
• Develop a data infrastructure that • provides full possibility to donate data for research and innovation
• Allow European citizens • To self‐determine the scope of managed data• To decide with whom to share and • To enter communication and interaction with other citizens.
Objectives
Smart4Health is funded by the European Commission under contract 826117
1. Citizen‐centered development2. Technological approach3. Data provision for research4. Example of citizen use cases
Overview
Smart4Health is funded by the European Commission under contract 826117
Citizen‐centered approach
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Smart4Health is funded by the European Commission under contract 826117 16
• European citizens are put center stage in this project – conceptually andmethodologically• Co‐creation and co‐design
Citizen‐centered
Photo by Antenna on Unsplash
Photo by Daria Nepriakhina on Unsplash
Smart4Health is funded by the European Commission under contract 826117 17
• Introductory short video outlining the framing of the discussion, the Smart4Health solution and potential question areas• Card‐based discussion round: participants moved through 3 sets of cards and arranged them on a game pad• Start phase: positions that can be taken • Main phase: concrete situations of use • End phase: themes for us to further look into in the further course of the project
Co‐creation workshops with citizens
Smart4Health is funded by the European Commission under contract 826117
www.smart4health.eu
Co‐creationworksho
pswith
citizen
s
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Smart4Health is funded by the European Commission under contract 826117
Technological approach
19
Smart4Health is funded by the European Commission under contract 826117
Self‐collected data
Web App(Analyze Clinical &
Signal Data)Clinical Data
Integrating Health Information Systems, Mobile Research and Consumer Devices
Bild von TayebMEZAHDIA auf Pixabay
Donation toResearch
Smart4Health is funded by the European Commission under contract 826117 21
System context map
21
National contact points (National EHR solutions)
e.g.
MedMej (NL)
Health service systems
Citizen Health Data Platform
Research Platform
Professional healthservice applications
Convenience healthservice applications
HealthMonitor(ITTM)
Wearables app(KBZ, UNINOVA)
Clinical systemsHospital information
Systems
Practice Management
Systems
UKA
Context systemsinvolved in project
System
in scop
eSystem
context
Research Data Infrastructure
ELIXIR
ResearcherCitizen user
Research data provider
ISMMS
UKA
De‐identification and donation
Smart4Health is funded by the European Commission under contract 826117
www.smart4health.eu
3rd-party Apps
Architecture
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4Health Navigator
4Health Platform
Citizen Health Data Platform
User-defined access control
Storage of encrypted, personal health data
Health data sourcesHealth data sourcesHealth data sources
Data ingestion pipeline
Data transformation& harmonisation
IHE profile mapping
Real-time dataingestion
Data qualityvalidation
Ontology mapping
Multilingual
Encrypted FHIR
Research PlatformReal-time analytics
and ML engine
De-identified, semanticallyintegrated health data
Data donation&
De-identification
SDK to Citizen Health Data PlatformModule for data encryption
and decryption
SDK to Research PlatformAnalytics and
machine learning toolkit
Smart4Health is funded by the European Commission under contract 826117
www.smart4health.eu
3rd-party Apps
4Health NavigatorUI, Services, Applications
Health data sourcesHealth data sourcesHealth data sources
Health care provider
Wearables, sensors
Data donation
EU Interoperability Agreements
Dynamic Consent Management
EU Electronic Health RecordPatient Summary/IPSCitizen Health DataePrescriptionEU Reference Networks, e.g.
disease
eIDAS Identity ManagementeID
Personalized Health Services Personal Health AssistantPersonalized MedicineClinical Decision Support
Hospital Information
Systems
PracticeManagement
Systems
ArchitectureArchitecture
Smart4Health is funded by the European Commission under contract 826117
Encryption allows citizens to dictate who they share their information with and when
Maximum Privacy
Encryption allows citizens to have complete control of their data
All documents uploaded to the platform are encrypted. The platform teams cannot make sense of what a citizen stores in their account
Smart4Health is funded by the European Commission under contract 826117
Data provision for research
25
Smart4Health is funded by the European Commission under contract 826117
Broad Consent:• Currently trending / state‐of‐the‐art• Consenting to a framework for future research of certain types
• Includes ethical review of each specific research project by an independent ethics committee
• Strategies to keep the data donor updated• Withdrawal possible at any time• If anything in the framework changes, the participant should re‐consent
• Examples: BioMe Biobank, UK Biobank, Medizin Informatik Initiative
Dynamic Consent:
• New approach for engaging individuals about the use of their personal information
• Interactive personalised interface that allows participants to engage as much or as little as they choose and to alter their consent choices in real time
• Change consent without revoking• Examples: EnCoRe, RUDY Study, CHRIS Study, PEER
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Consent‐based data provision for research
Smart4Health is funded by the European Commission under contract 826117 27
• Broad consent withdynamic options (for the prototype)
Consent Management
Implementation ofBroad Consent
Dynamic elements
User Engagement
Data Donation
Re‐Contacting
Options to change consentwithout revoking
Smart4Health is funded by the European Commission under contract 826117
Use cases
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Smart4Health is funded by the European Commission under contract 826117
8 citizen use cases
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4Health Platform
www.smart4health.eu
Smart4Health is funded by the European Commission under contract 826117 30
• Patients at University Hospital Aachen, Germany,
• Provided with a full electronic health file called “FallAkte Plus”
• The citizens provide access to their health record for treatment also at other hospitals • Maastricht University Hospital, Netherlands, • Ospedale San Raffaele, Italy, and • Hospital in Funchal, Madeira.
Full Health Record throughout Europe
Smart4Health is funded by the European Commission under contract 826117 31
• Citizen, working in the shop floor or office environment
• Workers in dedicated multi‐business industry parks in Portugal
• Use of wearables gives worker wide perspective of posture during the daily routines.
• Improve the posture and Back pain prevention.
• Data accessible through Smart4Health platform
• Possibility to share data with the Health and Safety Office of the company or the medical centre
• At least 1,000 citizens
Life and Work place, back pain prevention
4Health Platform
Smart4Health is funded by the European Commission under contract 826117
• Broad societal use of the platform in a dedicated region and with a cross‐border focus. • With support of the Government of Madeira • With participation of the health care infrastructures and workforce.• Elaborating to a health system targeting 200,000 Citizens in Madeira• Living and working• Travelling and spending leisure time
• EHR exchange between • Madeira health centres, • University Hospital of Aachen (DE)• Maastricht University Hospital (NL)• Ospedale San Raffaele (IT)
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Regional health, tourists,preparedness andback pain prevention
Smart4Health is funded by the European Commission under contract 826117 33
• Ingestion and integration of Millions of existing longitudinal, comprehensive EHR data and genotype data
• Dedicated, experienced staff at ISMMS in implementation of citizen‐centric next generation health data management in the US
• Transfer of know‐how and domain expertise to EU
Full US Electronic Health Records for research
Smart4Health is funded by the European Commission under contract 826117
EU Horizon 2020 projectfacts
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Consortium Coordination: UNINOVA (PT)
Scientific Coordination: HPI (DE)
Project Identifier: 826117
Maximum Grant Amount: 21,8 Mio €
Duration: 50 months
Consortium: 18 partner
Smart4Health is funded by the European Commission under contract 826117
Consortium
data4life
Smart4Health is funded by the European Commission under contract 826117
Thank you for your attention.
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Twitter.com/Smart4HealthEU
Facebook.com/Smart4HealthEU
Linkedin.com/Smart4Health
smart4health.eu
• Dr. Attila Wohlbrandt• Project Manager, Digital HealthTel.: +49 331 5509 4844 M: +49 176 432 573 87
• Digital Health CenterRudolf‐Breitscheid‐Str. 187 14482 Potsdam, Germany
• Prof. Erwin Böttinger