Unlocking Data for
Healthy Living
Takanori Fujita
Centre for the Fourth Industrial Revolution Japan
Healthcare Data Policy Project

12.Oct. 2020

World Economic Forum

Centre for the Fourth Industrial Revolution（C4IR）
In March 2017, The World Economic Forum established a public-private platform in
San Francisco to co-design and pilot innovative new approaches to policy andgovernance. The aim is to harness technology for the benefit of society.

With the aim of promoting global
rule-making, the Centre Network
involves a wide range ofstakeholders from government,
industry, academia, civil society, local
government and internationalorganizations

2World Economic Forum

C4IR Network
The C4IR network has now expanded to 13 centers with 37 partnercountries and institutions.
Norway – Affiliate with the Norwegian Government; 7 Jan 2020
launch (4IR for the Earth; Ocean Data, Global Plastics and Oceans
Surveillance focusing on IoT)
Denmark – Partner
Finland – Partner/Affiliate potential
Russia – Partner/Affiliate potential
UK – Partner/

Affiliate potential
France – Partner/
Affiliate potential

Canada – Partner

Germany － Affiliate potential
OHCHR – Partner

WFP – Partner
Turkey – Affiliate; Jul/Aug2020 launch (AI, IoT)

Israel － Affiliate with Israel
Innovation Authority; 19 Sept2019 launch (Avs/AAMs,Health Data, Drones)

Rwanda – Affiliate (AI, Data
Policy, Drones)

South Africa － Affiliate; 23 Mar2020 launch (IoT, Blockchain, Data
Policy)Kazakhstan － Partner

Azerbaijan － Partner
Bahrain – Partner

Japan – 2 Jul 2018 launch(Healthcare, Mobility, Smart
City and Data）

San Francisco

UNICEF - Partner
Inter-American Development Bank - Partner
US National Governors Association - Partner

South Korea – Partner
City of San Francisco - Partner
China – 19Sept 2018 launch
Mexico － Affiliate potential
India – 10Nov2018 launch (Precision Medicine, Smart City,Drones）
Columbia － Affiliate with(Drones, AI, Smart City)
Ruta-N; 29 Apr 2019 launch
Vietnam － Partner/Affiliate potential(AI, IoT, Blockchain, Data
Marketplace)
Malaysia － Partner potential
Singapore － Partner/Affiliate potential
UAE – Affiliate with Dubai Future
Foundation; 28 Apr 2019 launch
Brazil － Affiliate; July
(AI, Blockchain, Precision Medicine)2020 launch (AI, IoT,Australia－Affiliate
potential
Data Policy)
Saudi Arabia – Affiliate; 5-6 Apr
New Zealand － Partner
2020 launch (AI, IoT, Data Policy,Chile －Partner potential
Blockchain, Avs/AAMs, Drones)3

World Economic Forum Centre for the Fourth Industrial Revolution Japan

Our Organization

Founders：

Objectives：Maximizing the benefits of the Fourth Industrial Revolution bypromoting open innovation in policymaking, filling governance gaps andensuring policy interoperability
C4IRJapan Partners：• Hitachi• AISIN SEIKI• McKinsey & Company• NEC Corporation
Incorporated Japan• Suntory Holdings• Mitsubishi Chemical Holdings• Salesforce.com• MORI Building• SOMPO Holdings• HORIBA• Takeda Pharmaceutical Company • Eisai• DENSO CORPORATION• Nippon Telegraph and Telephone• Toyota Motor Corporation
Corporation (NTT)Forum Partners engaged in C4IRJapan Projects：• Mitsubishi UFJ Research and• Baker & McKenzieConsulting
4• Visa Worldwide Japan• Deloitte Tohmatsu ConsultingWorld Economic Forum Centre for the Fourth Industrial Revolution Japan

Our Team

Chizuru Suga
Head of the Centre

Shigehiro
Jonathan Soble Fumiko Kudo Emi Kosuda
Muraki
Editorial &Project
Operations
Head ofCommunication
StrategySpecialist
Administration
Lead
Lead

Takanori Fujita
Healthcare
Data Policy
Project Lead

Seiichiro
Yamamoto
Healthcare
Data Policy
Project Lead

Moeno Okada
Operations
Coordinator

Miho
Nishizawa
Operations
Coordinator

Yusuke Inoue
MHLW Fellow

Haruka Saito
MakitoMLIT Fellow Nishibatake
MOF Fellow

Hiroaki Atsuji Yoshihiro Irino
MasakoReiko Onodera
Yasunori
Keisuke Naito
TakedaSuntory Fellow
OkamotoTakeda
Suzue
Eisai Fellow
Pharmaceutical
Mitsubishi Tanabe Pharmaceutical
SOMPOFellow
Pharma Fellow
Fellow
Holdings Fellow

ShuichiTadashi Kaji
Rushi Rama Yuta Hirayama
Smart Cities
Kuroishi
Hitachi Fellow
Smart Cities
Project Lead Project Specialist Deloitte Fellow

TakehikoTakuya Masuda YasunoriNagumo
Salesforce Fellow Mochizuki
MURC Fellow
NEC Fellow

Yosuke Horii
Eisai Fellow

MichihiroHiguchi
MAFF Fellow

Teruka Sumiya
Agile Governance
Project Specialist

Masafumi
Takakazu
Hiroto Uesaka
KawasakiDoi
Denso Fellow
McKinsey & Co McKinsey & CoFellow
Fellow

Ichiro Akimoto
NEC Fellow

Yuiko Noda
VISA Fellow

Youichi Horry
Hitachi Fellow

Daichi Iwata Shuji Sakamoto Noriko Takata
NEC Fellow
TakedaTakedaPharmaceutical PharmaceuticalFellow
Fellow

Yoshikazu Yaeko Hodaka Satoshi Hondo Hiroyuki
Suzumura Baker McKenzie Toyota Fellow
Yogo
AISIN・Fellow
FellowAISIN・Fellow

5C4IR Japan

Healthcare Data Policy Project
Goal• Develop a data governance framework toimprove prevention and quality of life for people
with dementia and other aging-related diseases,from the view point of individual and social value

Impact• Help expand the health frontier for the world• Gather and leverage a large, comprehensive data
set for the population to improve wellbeing,
including in the pre-diagnosis phase

Timeline
Spring-Summer 2019: Research and compare international anddomestic legal regimes for health data. Compile examples ofexisting best practices and potential framework upgrades.
July 2019: Institutional Session at AMNC19January 2020: APPA white paper publishedFebruary 2020: Implementation project of APPA started
Late 2020: 2nd white paper published for GTGS

• Leverage the unique public-private set-up of theJapan Centre to achieve real regulatory impact ina difficult health data area

Partners
Eisai, Mitsubishi Chemical Holdings, SOMPO
Holdings, Takeda Pharmaceutical
6

C4IR Japan : Healthcare Data Policy Project

Healthcare Data Governance Framework＜Data sources＞

Services and Rewards

Informed consent
Individuals

・ Opt-in・ Opt-out

Data platform＜Data Exchange＞＜Data users＞

Anonymized Data

Identification＜Distributed Database＞

Companies- Next-Generation
Medical Information
Law

Local
governments

Standardized Open API

Hospitals

Without Consent
Organizations

SpacesAuthorized
Public Purpose
Access (APPA)- Privacy Protection Law- Basic Law on MedicalInformation

Gov DB

NDB

Nursing careDB

Pseudonymised
Data/ Calculation
results

AI

Universities andresearch institutions＜Trust＞

Secure trust by eliminating fakedata, obtaining effective consent,
satisfying APPA requirements,
ensuring traceability, etc. Includes
ethics review committee function 7Healthcare
Data Policy

Authorized Public Purpose Access (APPA)
Social implementation
Present ‘APPA Principles’ and evaluation criteria, along with examples of social implementation, topromote data utilization for the public interest

Goal
We have proposed a data governance model, APPA, that supports theuse of data for public-interest purposes while protecting the rights ofindividuals through mechanisms including, but not limited to, explicit
individual consent, while securing cooperation from data holders. This
project seeks to promote the social implementation of APPA-basedmodels by providing examples of evaluation criteria and establishingcore “APPA Principles” through a close examination international laws
and regulations.

ImpactImpacts of the project• Promotion of data utilization for the public interest through "APPAprinciples"• Support for social implementation of APPA concept throughpresentation of evaluation criteria• Proposal for ideal governance approach that supports practicalimplementation of APPA

Milestones～ Aug. 2020
Determination of APPA principles andevaluation criteria based on close
examination of international laws andguidelines regarding data utilization
Sep.- Oct. 2020
Discussion with experts in C4IRnetwork
Nov. 2020
White Paper
Apr. 2021
Presenting "APPA Principles" in GTGS toraise public awareness of the need topromote data utilization for "publicinterest" purposes

APPA movie: https://www.weforum.org/videos/wef-authorized-public-purpose-access8Governance Gap Analysis Based on Three Factors••

We have been struggling with the balance among three factors even before this pandemic
With our new approach, trying to offer a systematic framework that can apply to these problems
Biased toward
individual
Ex: GDPR

Biased toward
data holders
Ex: GAFA data hegemony

Biased toward
publicpurpose
Ex: Authoritariansocial credit systems

9APPA: Authorized Public Purpose Access••

APPA is a new concept for
managing access authorization
to healthcare data without
relying on explicit consent
Japan Centre has pitched it
through the Institutional Session at
AMNC19 and the White Paper
issued in January 2020

Data Holder

Data Flow

Authorized
PublicPurpose

Review(Legal basis)

Authorized Third
PartyAccess
Data Subject Authorized Public

PurposeData Commons /Distributed DB
PublicData Users

Service/Value10Value of APPA
Existing Examples
Natural disasterUse of personal medical data to carefor victims of a natural disaster

Disease pandemic

Cancer registry

Data on infectious disease patients used
to prevent outbreaks

Registration of all cancer patients for policy
planning and monitoring of morbidity trends

Value Created by APPA

Expanding disease registry other than cancer

Prevention of child abuse

Efficient Post Marketing Surveillance (PMS)

Development of healthcare service by
medical records connected with life log data(on meals, steps, purchase records, etc.)- Government: To monitor morbidity and mortality trends and plancountermeasures- Pharma: To provide list of clinical trial candidates- Patients: To facilitate access to public services- Pharma: To track side effects and therapeutic outcomes ofdrugs- Children: To share information about suspected child abuselearned through professional position (doctors, teachers, etc.)with local government and others- People: To access to innovative healthcare services

11

Healthcare
Data Policy

Trust & Willingness in the use ofpersonal data
• How can private companies secure Trust & Willingness from individuals and society when they seek to use personal
data? This project looks for answers by sharing best practices of building and implementing a corporate code ofconduct framework.
• As a Use Case, the project looks at nursing care data, which can include data on vulnerable people such as the elderly

Goal•

•
•
•

Create innovative value by making it easier to harness data
Protect individual rights and social value
Reduce costs for companies seeking to study or establish data
governance systems••

White paper
Consideration of social implement

January-February, 2021

Consideration of dataset bias

Sympathy for the purpose ofuse by parties and society
An internal system to achieve
Ethics by design

UI and communication methods
for people with dementia and theelderly

Consideration of potential bias in
the data set being collected

Ensuring transparency (data use,processing purposes, etc.)
Other social values (e.g.,consideration for vulnerablegroups)
Appropriate anonymous
processing methods for care data
Human involvement principle

Implement/Operation

Gathering best practices, Community building
Scoping key components of Trust and Willingness
Scoping pilot projects

The pros and cons of using
employee data

Appropriate method forobtaining consent from people
with dementia

DataAcquisition•••

Risks in the care data analysis
and evaluation phase

Risks and benefits of using
nursing care data

Milestones

June 2020 and beyond

The pros and cons of using
data related to people withdementia

Data processing
analysis/learning

ImpactPossible Issues in the Use of Nursing Care Data (hypothesis)

Planning

Specify practical and useful applications of data governance forprivate companies that wish to secure Trust & Willingness fromindividuals and society when they seek to use personal data.
Examples include “governance organization and workflow
patterns in private companies,” “Know-how for communication
with individuals and society,” and “Hints for navigating grayzones in laws and guidelines.”

Explanation on how to makedecisions using data
Handling of profile scoredinformation
Literacy and safety managementof data handlers

12

Healthcare
Data Policy

CommonPass : Initiative for safe border crossingsThis project aims to develop a framework to ensure the interoperability of rules at a global level for free movement of people acrossborders.

Goal
1. Establish international standards for the free movement of people
across borders using a multi-stakeholder approach.
2. Starting with the sharing of test results and vaccination histories in
response to COVID -19, ensure a balance between safe economic
activities and public health though the use of individually portable
data
Impact• Efficient sharing of certified digital data, reliable test certificates, anticounterfeiting• Providing an interoperable tool that is not subject to complex multicountry rules• Support for immigration authorities when organizing international
eventsMilestones

Partners in Japan

Apr, 2021
Use at GTGSThe Commons Project, Japan Business Federation, Japan Association ofCorporate Executives, Japan Association of New Economy, Information
Technology Federation of Japan, Japan Association for Medical Informatics,
Japanese Society of Laboratory Medicine, Suntory, NEC, etc.

Jul, 2020
International kick-off (350 participantsfrom 52 countries)
Aug, 2020 Pilots in six East African Community
countries

Sep, 2020Pilot on international flights

Jul, 2021
Use at Olympic/Paralympic
13

Border reopening: a global challenge
How can we trust a lab test or vaccination from another country?
Is the lab or vaccination facility accredited/certified?

What kind of lab test/vaccination? When was it? What was the result?

Is it the same person?

Does the traveler meet border entry requirements?

14Framework

Lab & vaccination
results and travel ID
shared via HL7 FHIR
standard

Registry of trusted lab& vaccination sites

Yes or No response given(no health information)

Lab &vaccination
records
National / Local RegistryElectronic Medical Record
Individual testingand vaccination

Personal Health
RecordCommonPass
ComplianceEngineApps & services
built onCommonPass
framework

Individual
cleared totravel / enter

Health screening
entry rules

15

On July 9th, The Commons Project, The Rockefeller
Foundation and The World Economic Forum…

https://www.youtube.com/watch?v=57IYp_cQEsE
16

Global Phased Rollout
Pilot Phases:
1.

Demonstrationflight &evaluation

2.

Commercial
flight &evaluation

3.

Expansion tomultiple flights
on route

4.

Expansion toadditionalroutes, using
hubs andairline
alliances toscale

Key Principles and App Prototype
CommonPass adheres tothe following key principles:● Agency: Data is stored or
shared only with explicit,
informed consent● Data Minimization: Only theminimum amount of personal
data is used for any transaction● Federation: Personallyidentifiable health informationis stored only at the source oron the user’s phone● Use: Data are only stored tothe extent necessary and neverused for any other purpose

Project members in Japan
Centre for the Fourth Industrial
Revolution Japan

Takanori
FujitaHealthcare
Data Policy
Project Lead

Seiichiro
Yamamoto

Yoshihiro Irino
Suntory Fellow

Daichi Iwata
NEC Fellow

Healthcare
Data Policy
Project Lead

+ Staffs, Intern, and Members from NEC

HiroakiMiyataTCPJapan
Representative
Keio University

Main collaborators in Japan:
National Security Bureau, (Cabinet Secretariat), Ministry of Health, Labour and Welfare, Ministry of Economy, Trade andIndustry, Ministry of Land, Infrastructure, Transport and Tourism, Ministry of Foreign Affairs, and Ministry of JusticeJapan Business Federation (Keidanren), Japan Association of Corporate Executives, Japan Association for Medical
Informatics, Japanese Society of Laboratory Medicine

Discussion Points
1. How do we face diversity and ensure inclusiveness in digital
health?
How can we support for data collection and utilization ofelderly and disabled people regarding PHRs?
2. How and by whom can digital health build TRUST undercovid-19 pandemic?
How can social consensus on the data utilization be formed?
How can we ensure the interoperability of systems or apps
with other countries?

Discussion Points
1. How do we face diversity and ensure inclusiveness in digital
health?
How can we support for data collection and utilization ofelderly and disabled people regarding PHRs?
2. How and by whom can digital health build TRUST undercovid-19 pandemic?
How can social consensus on the data utilization be formed?
How can we ensure the interoperability of systems or apps
with other countries?

Discussion Points
1. How do we face diversity and ensure inclusiveness in digital
health?
How can we support for data collection and utilization ofelderly and disabled people regarding PHRs?
2. How and by whom can digital health build TRUST undercovid-19 pandemic?
How can social consensus on the data utilization be formed?
How can we ensure the interoperability of systems or apps
with other countries?