Building today a healthier tomorrow centred EU EHR ......System context map 21 National contact...

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


Big Idea ...to EU-wide, active, continuouscitizen-generated health data

and interoperable electronic health records

From passive, limited anddisconnected data collection

Smart4Health


Problems & opportunities

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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


Different cultures

Diverse Europe

Photo by Pixabay from Pexels


• 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


Citizens carry around their health data in files or not at all

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Citizens cannot access their data or do not know that they could

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Wearable data is (mainly) proprietary

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Bild von WikimediaImages auf PixabayBild von OpenClipart‐Vectors auf Pixabay


• 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


www.smart4health.eu

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www.smart4health.eu

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Leitmotifs

I can help others by donating data

I am supported managing my own health


• 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


1. Citizen‐centered development2. Technological approach3. Data provision for research4. Example of citizen use cases

Overview


Citizen‐centered approach

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• 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


• 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


www.smart4health.eu

Co‐creationworksho

pswith

citizen

s

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Technological approach

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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


System context map

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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


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


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


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


Data provision for research

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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


• 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


Use cases

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8 citizen use cases

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4Health Platform

www.smart4health.eu


• 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


• 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


• 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


• 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


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


Consortium

data4life


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

Building today a healthier tomorrow centred EU EHR ......System context map 21 National contact...

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