The event presents real-life examples from European organisations that have used the Rulebook for Fair Data Economy to develop data-driven business. The online event was organised on 3 March 2021 by Sitra. Presentations: - Jaana Sinipuro, Sitra - Olli Pitkänen, 1001 Lakes - Marko Turpeinen, 1001 Lakes - Lars Nagel, International Data Spaces Association - Cátia Pinto, Serviços Partilhados do Ministério da Saúde - Matthias De Bièvre, aNewGovernance

1. Fair Data Economy ─ a New Strategic Theme
in Sitra
Europe rules – making the fair data economy flourish
Jaana Sinipuro, Project Director @jsinipuro

2. “The impact of digitalisation along with the need to capture, transfer and process more and more data
will inevitably require new policy instruments to reach the 2030 and 2050 climate targets…”
https://ec.europa.eu/digital-single-market/en/news/energy-efficient-cloud-computing-technologies-and-policies-eco-friendly-cloud-market
Landscape

3. Position
Paper
Common
workplan? How?
GAIA-X
Coordination between existing initiatives
and projects like EOSC, ELIXIR,
GA4GH, the National Medical
Informatics Initiative (MII)…
TEHDAS - Towards European Health Data Spaces
(Working on Legal and Organisational
interoperability in Health Domain)
”Outsiders” how
to engage?
Need for coordination and choices

4. DATA ECONOMY AS EMERGING POLICY AREA
Country Club Approach

5. There must be a balance
between all stakeholders’ needs,
interests and rights

6. WALK THE TALK
Working more closely with Business Communities

7. TRUST
Building trust-based data sharing ecosystems
Organisations
Source: Towards a European-governed Data Sharing Space, Enabling data exchange and unlocking AI potential
BDVA Position Paper, V2 11-2020
https://www.bdva.eu/sites/default/files/BDVA%20DataSharingSpaces%20PositionPaper%20V2_2020_Final.pdf
People
Governance
Data
Technology

8. Data as Equity
“We believe that the post-COVID-19 digital era needs to be defined by the
concept of “data equity.” We use the word equity very deliberately for its
double meaning: equity as a mark of having a shareholding in a valuable
asset, and equity as a term that implies fairness of value realization.”

10. The Rulebook for
Fair Data Economy
Marko Turpeinen & Olli Pitkänen
1001 Lakes

11. Rulebook Data-Sharing Starting Points
Fairness &
Ethics
Privacy
• Data
protection
Legal
System
Growing
Ecosystems
• Common
“DNA”
Data
Economy &
Business
Easier
Network
Setup
Technology
Framework

12. Diverse Workgroup
Sitra – a public fund – the initiator
Companies
Universities
Authorities
• Ethics
• Marketing
• Technology – ”toolification”
• Legal
Subworkgroups

13. Technology
Business
Ethics
Legal System
Data Network – Rulebook
General Part
Glossary
Parties
Parties
Parties
- Members
Roles
Externals:
- Individuals
- Legal entities
- Others
• Data Sources
• Data Subjects
• Subscribers
Terms
of use
Data
Sets
Check List
Constitutive Agreement
Governance Model
General Terms & Conditions
Accession
Agreement
Other Appendices
Description of Data Network
Code of Conduct

14. Checklist
Rulebook
checklist
Business
Value and
utilization of
data
Data Rights
Governance
Legal
Contractual
principles
Liabilities
Content
Technology
Infrastructure
and common
solutions
Core
functionality
Administration
Data
Governance
Data structure
Ethics
Security
Commitment to
ethical practices
Transparency
and
communication
Sustainability
Human-centricity
Far networking
Purpose

15. Examples of
rulebook use cases

19. Thank You!
Olli Pitkänen
olli.pitkanen@1001lakes.com
Marko Turpeinen
marko.turpeinen@1001lakes.com

20. IDS as a blueprint for European Data Strategy
Europe rules –
making the fair data economy flourish
Online Event
March 3, 2021 at 1:00 pm - 2:30 pm
Lars Nagel
CEO International Data Spaces Association

21. EUROPEAN STRATEGY FOR DATA
www.internationaldataspaces.org
Manufacturing
Health
Agriculture
Green
Finance
Public
Administration
Mobility
Energy
Skills
9Data spaces in key sectors
European Data Space
• Availabilty of large
pools of data
• Infrastructure to use
and exchange data
• Appropriate
governance
mechanisms
How to
realize?

22. It is about vital ecosystems…

23. … and their resilient structures.

24. DATA SPACES
A CONCEPT FOR CONNECTING
ALL KINDS OF DATA ENDPOINTS
When broadening the perspective from an individual
use case scenario to a platform landscape view, the
INTERNATIONAL DATA SPACES positions itself as an
architecture to link different cloud platforms through
secure exchange and trusted sharing of data, short:
through data sovereignty.
By proposing a specific software component, the INTERNATIONAL DATA SPACES Connector, industrial data clouds can be
connected, as well as individual enterprise clouds and on premise applications and individual connected devices.
THIS IS A
DATA SPACE –
JUST ONE SPECIES
OUT OF
THOUSANDS

25. A EUROPEAN STRATEGY FOR DATA
www.internationaldataspaces.org
Manufacturing
Health
Agriculture
Green
Finance
Public
Administration
Mobility
Energy
Skills
9Data spaces in key sectors
European Data Space
• Availabilty of large
pools of data
• Infrastructure to use
and exchange data
• Appropriate
governance
mechanisms
• No silos!
• Enlarge the data pool!
• Cross-sectoral
benefits!

26. WE NEED COMMON
DESIGN PRINCIPLES FOR DATA SPACES
www.internationaldataspaces.org
IDS Association provides
▪ Open Reference architecture setting the framework conditions – based on standards
▪ Trust framework and scheme for data sharing
▪ Coordinating operations for essential data sovereignty services
This enables
▪ open, distributed data eco systems and marketplaces,
▪ ensuring data sovereignty for the creator of the data,
▪ and proven data-provenance for the user of data,
▪ all above audit-proof, if requested
▪ based on European values.

27. Publications
Milestone papers February 2021
▪ Position Paper “GAIA-X and IDS”
▪ IDSA Rule Book
Not only one but two very important
publications were published this month.
The IDSA Rule Book delivering the user manual
for the RAM and the position paper outlining
how the IDS concepts fit into the GAIA-X
architecture.

28. IDSA Rule Book
Version 1.0
Specifications for the
Standard
• IDS-RAM
• Associated
specifications
• Reference Code,
OSS, IDS-G
• Certification
Scheme
• Interoperability
testing
TECHNICAL
AGREEMENTS
Handbook for Support
Organization
• Admission
• Approval of
Evaluators
• Warnings,
suspension and
exclusion
ADMINISTRATVE
AGREEMENTS
Towards reliable
developments
• Versioning
• Release
Management
• Change
Management
MAINTENANCE
AGREEMENTS
What technology can’t
fix
• Example contracts
• Reusable schemes
• Link to other
resources and
activities
LEGAL
AGREEMENTS
Separation of duties
• Role model
• Definition of
essential services
• Definition of Base
Services
FUNCTIONAL
AGREEMENTS
OPERATIONAL AGREEMENTS

29. Design Principles
For data spaces to be built on
1. data sovereignty
2. a level playing field for data sharing and exchange
3. a distributed soft infrastructure
4. public-private governance

30. DESIGN PRINCIPLES FOR DATA SPACES
ENSURING DATA SOVEREIGNTY
Unlimited
Interoperability
Enabled by semantic data
descriptions
Trust between different
security domains
Certified, comprehensive security
functions providing a maximum
level of trust
Governance for the
data economy
usage control and enforcement
for data flows
Information Model Certification Scheme Concept of usage control

31. 4Security profiles
satisfying all needs from quick
data sharing to comprehensive
security requirements
Formal certification states
coherence to reference
architecture, interoperability
and software quality
Defined in DIN Spec 27070 on “security
gateway for sharing data and services”
and reference architecture model 3.0
IDS CONNECTOR
ENABLES ACCESS TO SOVEREIGN,
TRUSTED DATA SHARING ECOSYSTEMS
Implementation in different scenarios (embedded
systems, mobile devices, client server solutions)
Specifications for
implementing a connector
based on container
management technologies
provided on Gitlab
27070 +

32. LET‘S BUILD
DATA SPACES.
// 13
But please: make life easy by
using common design principles.
IDS is a very good starting point – let‘s discuss and learn.
www.internationaldataspaces.org

33. // 14
LARS NAGEL
CEO
INTERNATIONAL DATA SPACES ASSOCIATION
WWW.LINKEDIN.COM/IN/LARS-NAGEL-704411B8/
JOSEPH-VON-FRAUNHOFER-STR. 2-4
44227 DORTMUND | GERMANY
+49 231 9743 619
INFO@INTERNATIONALDATASPACES.ORG
@ids_association
#internationaldataspaces
www.internationaldataspaces.org
International Data Spaces Association
JOIN US!
@LARSMNAGEL
@

34. 08/03/2021 1
The Rulebook for a fair data economy:
How to use it as part of a National Health Data
Strategy ?
Cátia Sousa Pinto, MD
Advanced Analytics and Intelligence Unit
Shared Services of Ministry of Health
FROM big DATA TO smart HEALTH:
PUTTING DATA TO WORK FOR THE PUBLIC´S HEALTH
Data strategy for next generation National Health Service | Portugal 2021

35. 08/03/2021 2
As a Company we provide
eProcurement
Centre
ICT’s services
Mobile applications
Training Academy
EU Cross-Border
Services
eHealth
(NHS contact Center andTelemedicine)
Monitoring
and Control
SPMS
National Health
Service
Hospital
Centers
Local
Health
Units
Primary
care centers
Regional
Health
Administrations
Central
Health
Administration
Directorate-
General for
Health
Ministry
Of Health

36. 08/03/2021 3
Digital company
By becoming more efficient through the acceleration
of the digitalization of every aspect of the company
By unleashing better solutions to Citizens, health
professionals and, ultimately, to the entire health
ecosystem
Digital Health
A mean to disrupt the
traditional care delivery
models through an
accelerated and integrated
end-to-end digital health
strategy
A Company driven by Innovation

37. 08/03/2021 4
SPMS
As an Innovation-window between the EU and Portugal
Digital Single
Market
European
eHealth
Strategy
European
eHealth
Services
WHY
To define European eHealth Priorities and
Initiatives
To joint efforts - Memorandum of Understanding,
bilateral agreements
To share information and know-how among
healthcare organizations, government institutions
and national competence centres
HOW
Interoperability efforts
E-Health community development
Supporting better healthcare services
Building citizen´s trust at European and national
levels
MoU Finland
TEHDAS
HealthyCloud

38. 08/03/2021 5
FROM big DATA TO smart HEALTH:
PUTTING DATA TO WORK FOR THE PUBLIC´S
HEALTH
Data strategy for next generation National Health Service | Portugal

39. 08/03/2021 6
e – NATIONAL HEALTH (INFORMATION) SYSTEM

40. 08/03/2021 7
CORE VALUES
Maintain public´s trust
• Data Protection and privacy rights
• Transparency and trustworthiness
1
Qualidade
Validade de dados e indicadores
Governação da informação/gestão de dados
i
2
3
4
High-quality data
• Data quality regulatory framework
• Comprehensive ecossystem of indicators
Eficiency through data integration
• Interoperability and datawarehouse
• Complete picture of people´s health
Data-driven innovation
• Simplified user-interaction platforms
• Data ecossystem for AI

41. 08/03/2021 8
i-HEALTH: Key areas for a data-driven NHS
Key area 1: Stakeholder engagement
Key area 2: Legal and ethical framework
Key area 3: Advance primary healthcare-oriented analytics
Key area 4: Enhance national public health intelligence
Key area 5: Culture of innovation and collaboration
Trusted environment for data reuse endorsing
NHS foundational values

42. 08/03/2021 9
i-NHS : Data governance as health service
SPMS Advanced Analytics and Intelligence Unit |

43. 08/03/2021 10
SITRA´s Rulebook for a fair data economy
Portuguese translation

44. 08/03/2021 11
Rulebook added value
Organization wide learning
Awareness raising among national stakeholders
Easy-to-use tools for action : checklists, templates, glossaries
Reinforce the public´s trust in use of data for the common good
General overview of data networks domains: legal,
organizational, technical
The portuguese experience

45. 08/03/2021 12
Rulebook added value
The portuguese experience
Source: 2019 Sitra, Rulebook Template for Data Networks (www.sitra.fi/ihan)
• Contractual framework
• General terms and conditions (for
data sharing)
• Governance Model
• Datasets terms of use

46. 08/03/2021 13
Rulebook added value
Application to different data sharing purposes
Creates a common background for data sharing best practices
Expands the concept of fair use of data in operational terms
(code of conduct, data governance model, constitutive
agreement…)
General overview of datanetwork´s different components: legal,
organizational, technical - for non-experts
The portuguese experience

47. 08/03/2021 14
Next steps
“Data related” workshops and national discussion forums
Communication: internet, use translated version to foster
knowledge of good practices
Apply concept and templates in future data sharing agreements
Create a framework for ethical and trustworthy public-private
partnerships for data-driven innovation
How to use the rulebook to enhance fair
data reuse?

48. 08/03/2021 15
FROM big DATA TO smart HEALTH:
PUTTING DATA TO WORK FOR THE PUBLIC´S HEALTH
THANK YOU

49. Human Centric Personal Data Sharing Infrastructure
The Rulebook as a digital common

50. Who am I?
● aNewGovernance co-founder with Eric Pol and Olivier
Dion.
● Matthias De Bièvre is the CEO of Visions (visionspol.eu), a
data portability start-up focused on skills and
employment data working with universities, employers,
platforms, and public stakeholders over the world.
● Matthias leads the Skills Alliance, organizing the skills
data space with multiple stakeholders across Europe. He is
regularly invited to Europe, the USA, and the Middle East
as a speaker on data portability.
● Matthias is also a board member of PrivacyTech and a
founding member of the Institute for Digital
Fundamental Rights.

51. aNewGovernance is a Brussels-based association bringing together public
bodies, associations, academics, start-ups and corporates – in total 250
organizations from 53 countries. The association’s aim is to help build a global
personal data sharing infrastructure (the Human Permission Layer) with a
governance body as a PPPP (Public Private People Partnership). We work
towards fair and balanced relationships between individuals and organizations,
as well as between organizations, based on trust.
anewgovernance.org
Who are we?

52. Who we work with

53. Market Size
€ 750 B
SERVICES INTERMEDIARIES CITIZENS
A LAYERED
VALUE-ARCHITECTURE
MULTIPLE PERSONAL
DATA SHARING INTERMEDIARIES
+
A COMMON DATA SHARING INFRASTRUCTURE
+
A DATA SHARING GOVERNANCE FRAMEWORK
An infrastructure fostering human-centric interoperability and trust
Data Governance Act
Intermediaries will manage
consent for data-sharing

54. DIGITAL SERVICES
SECTORAL DATA
SPACES
(non personal data)
Retail Health Mobility
Permission
management
Legal
model
Trust
framework
Governance
framework
Personal data
transfer
Value
exchange
Data models,
ontologies
…
HUMAN PERMISSION
LAYER (HPL)
Industry specific
standards
Industry specific
regulations
… …
PERSONAL DATA SHARING INFRASTRUCTURE
MYDATA
OPERATORS
Skills
…
…
PERSONAL
DATA
SPACE
PERSONAL
DATA
GOVERNANCE
Identity
management
S1 S2 S3 S4 S5 Sn

55. onecub
The Rulebook
● Most advanced legal framework for human-centric data networks
● Adopted by aNG as the basis of the legal infrastructure
● Started implementation in different projects (skills, mobility, etc)

56. onecub
The Rulebook API
S1 S2 S3 S4 S5 Sn
Rulebook API
Governance API
Contract API
Git repo with clauses in
machine readable format (as
objects)
Checks if the data sharing
respects governance,
regulations and ethical rules.
Generates the contract.
Open and governed, to be used
and adapted by all.

57. aNG Legal Working Group
Adaptation:
● Separation of
Powers (DGA)
● inclusion of the
person in the
governance
● sectoral standards
(skills, mobilité, …)
● local/national
regulations
● translations
APIsation:
● translation into
machine readable
format (W3C
privacy vocabulary,
IEEE)
● open git repo for
clauses
● API for contract
generation
Use:
● Data
Sharing
Services
● Data Spaces
● ...
Join us !
working document
https://docs.google.com/document/d/1srgtQ_cpim0gej8FKdVsf2AR3QHlMipo5CFTZ4SAIiM/edit?usp=sharing
Contractual
framework

58. Employer :
• Recuits the right talents
C.V
• Compétences
• Expériences
• Diplômes,
certificats,
qualifications
Public agencies:
• Propose the right help
Training organisations :
• Propose the right trainings
University :
• Propose the right curricula and
follows their alumni in time
Skills data ecosystem
10
Platforms:
• Access precise data

59. #some partners
Public Training Employers Enablers

60. An example of an ongoing skills data ecosystem for a skills & jobs platform:
consent
consent
consent
consent
consent
c
o
n
s
e
n
t
c
o
n
s
e
n
t
c
o
n
s
e
n
t
consent
c
o
n
s
e
n
t
data
data
data
data
data
Led by
Job & skills platform
Training organisation
university
Soft skills platform Tutoring platform
Public employment agency
Public employment agency
Public employment agency
Local Employer
Local employer
MyData Operator

61. Thanks
CONTACTS US
anewgovernance.org
Eric Pol
Chairman aNewGovernance
Health Alliance
aNewGovernance
e.pol@anewgovernance.org
Matthias De Bièvre
CEO Visions
Skills Alliance
aNewGovernance
matthias@visionspol.eu
Olivier Dion
CEO Onecub
Mobility Alliance & Cities
aNewGovernance
olivier@onecub.fr