IHAN Make data work for people’s health - Follow-up webinar 28.10.2019

1. Make data work for people’s health! – A Follow-
up Webinar
28 October 2019

4. FAIR DATA
ECONOMY
Introduction to Sitra’s IHAN®

5. Data economy
must be FAIR for
End User
Service Provider
Data Provider
Data
Value
Service
Service
EndUser
Service
Provider
Data
Provider
Value

6. IHAN® project
• Building the foundation for a fair and functioning data economy
and creating a common concept for data sharing.
• Setting up European level rules and guidelines for fair use of
data.
• Piloting new concepts based on personal data in collaboration
with pioneering businesses.
• Developing an easy way for individuals to identify reliable
services that use their data in a fair way.
• Project runs until 6/2021

7. How IHAN® works
Service
Data
Service provider
Requests for data
Data providers
Consumer/
Patient
Consent
to My
Personal
Data

8. Facilitating mindset change through practice
Business Model
Rulebook describes
companies’ legal,
business, technical
and governance
framework in a data
ecosystem. It is a
founding document
that members sign to
adhere to.
Uudistamo/Leap
renews business
models and guides
organisations to
create new data-
based products and
services in a fair way.
Mindset change
Policy Brief − A
Roadmap for a Fair
Data Economy
charts a European
vision for a fair data
economy and targets
EU policy makers.
European’s Attitudes
Towards the Use of
Personal Data −
Citizen Survey:
8,004 responses
from four countries
(12/2018).
The future of
European companies
in data economy
survey: 1667
responses from four
countries (05/2019)
Governance
National Steering
Board − creates a
national consensus
to realise Finland as
an IHAN testbed,
utilizes EU
presidency 2019,
engages ministries,
and takes fair data
economy on the EU
roadmap.
Governance model:
home base for IHAN
components and
deliverables after
Sitra’s IHAN project
ends.
IHAN® for DEVELOPERS
Reference Architecture, IHAN Sandbox,
Open Source Components
IHAN® for BUSINESSES
Concept UUDISTAMO®, Guidelines and
Frameworks, Test Ground for New Digital
Services
IHAN® for CITIZENS
Digital profile tests and recommendations,
Fair Data Label
PROJECT DELIVERABLES (EXIT)
GOVERNANCEMODEL&
STRATEGYFOREXECUTION
IHAN® for POLICY MAKERS
Facts for policies
Roadmap
WORK PACKAGES
Enabling
technology
IHAN blueprint
describes functional
and non-functional
business and
technical
requirements. How
components can be
built according to
IHAN requirements.
IHAN Technical
pilots − thirteen
ongoing.
CEN-CENELEC
workshops refine the
technical
requirements of the
IHAN architecture’s
key concepts through
an open process.

10. Make data work for people’s health!
Webinar for Pioneers in data-driven
Health Innovations
Pilot project: My Travel Health
Perttu Prusi

11. Copyright 2019 FUJITSU
My Travel Health – What is it all About?
Copyright 2019 FUJITSU11Confidential
Validated and
meaningful
health data
Citizens
Consent,
Identity &
Authorization
Multilanguage UI
(Finnish, English
and Japanese)
KANTA
services
IHAN compliant identity,
consent and logging
Kanta data
mapped to
IPS Bundle
Healthcare
professionals
My Travel
Health
Application
Shared view in to
Personal Health data

12. Copyright 2019 FUJITSU
My Travel Health Application
Copyright 2019 FUJITSU12Confidential
IPS Bundle
based
categories
Drilling down
to details
Additional health related services, like
traveler’s insurance company’s preferred
IHAN blueprint as guideline for design.
What can be expected?
• Guideline vs. service specification
• Complementing and challenging the
architecture
• Adjusting the IHAN guidelines to
existing and overlapping
components
International Patient Summary Bundle
• Internationally recognized standard
developed by HL7
• Basis for cross-market portable
solutions
• IPS translation challenges

13. Copyright 2019 FUJITSU
Q & A
Copyright 2019 FUJITSU13Confidential
• Meaning of the IPS bundle and what it means to transfer data from Kanta to an IPS bundle à internationally
recognized framework for patient summary data
• How does the translation process work ? à Currently based on ICD10 coded information. No natural language
translation
• Who is responsible for the quality of the translations ? à For production, a public organ needs to be in place
• FHIR route for IPS, not CDA à Flexible and future compliant resource based APIs for cost-efficient and service
oriented consumption
• How individual person can be motivated to provide the access to personal data and be beneficial? à Kanta
service role in Finland, better service
• Code system: ICD10
• Where is the logging implemented, or simply located? à Kanta / application / IHAN components

14. Copyright 2019 FUJITSU
Target Component Diagram and IPS Composition
Copyright 2019 FUJITSU14Confidential
IPS Component
IPS Service:
IPS json bundle
REST API
MyTravelHealth
Arrow shows the
direction
of data flow
Kanta PHR
Kanta Data
Management
Service
ePrescription
Service
Code Server
Fujitsu
Fujitsu
KELA
THL
KELA
KELA
IPS Translation
Service
Fujitsu

16. IHAN and the real world
data provider
service provider
• Levels of authentication
• Semantics
• Data transportation
• Service delivery
• Security procedures
• Industry standards
• Best practices
individual
data consent
outside IHAN boundaries, to
be agreed by providers

19. RULEBOOK

20. From bilateral to many-to-one
20
Multiple bilateral agreements Rulebook

21. Data Ecosystem Rulebook
- Ecosystem Rulebook is the founding document that members of a data
ecosystem sign to adhere to
- Rulebook helps the ecosystem orchestrator to create the rulebook together
with its ecosystem partners
- Rulebook template contains a set of control questions that drive the results to
fill the rulebook section by section:
1. Business – What is the vision and mission for the ecosystem. What are the business
models for all participants in the ecosystem. Also terms on which new participants can be
taken onboard
2. Technical – what technical means (data formats, consent management, logging etc.) are
used
3. Legal – How different legislations enable or inhibit the activities in the ecosystem.
4. Data – different laws and regulations on different kind of data
5. Ethical – how data is sourced and how services utilize data. ow ecosystems thrive from
sustainable and fair use of data. What kind of values ecosystems have
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22. Objective
- To create a common rulebook model with a base structure for different data
ecosystems
– Making it easier and cost efficient to create an ecosystem rulebook
– Making it possible for companies and organisations to join various data ecosystems more
easily
– Increasing know-how, trust and common market practises in the market
– Ensuring fair, sustainable and ethically business within the data ecosystems
- To build a tool that helps different data ecosystems to utilize a common
rulebook structure and a process where by answering various modular
control questions, to create make a initial version of the data ecosystem
specific rulebook. The initial rulebook is then finalised by experts.
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23. Current state
Preparation Finalization
23

24. Near future state
Preparation Finalization

25. End state
Preparation Finalization
25

26. Technology
Business
Ethics
Legal System
General Part
- ”sales brochure”
Check List
- Control Questions
Parties
PartiesParties
- members
Roles
Externals:
- Individuals
- Legal entities
- others Terms
Data
Sets
Code of Conduct
Agreement
Glossary
Specific Terms
General Terms
Accession Agmt
Business
Annex
Tech
Annex
Data Network – Rulebook

27. Rulebook Next Steps
- Current working group will create initial version of control questions and rulebook
structure by end of October
- Additional members will be invited into the working group after this
- Tool creation will commence after baseline has been stabilized
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