@jsinipuro @sitrafund #IHAN

IHAN® The New International Protocol to BoostHuman-Driven Data Economy

Jaana Sinipuro

Project Director, Sitra

5 key facts about Sitra

1. A gift from Parliament to the 50-year-old Finland.

2. An independent foresight agency: futurologist, researcher, visionary, developer, experimentalist, partner, trainer, networker.

3. Funded by returns on endowment capital and capital investments.

4. Envisages Finland as a successful pioneer in sustainable well-being.

5. Its vision is supported by three themes, six focus areas and dozens of projects.

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Building our future together

Briefly about Isaacus initiative

The Isaacus project (2015–2018) at Sitra

- Prepares the basic principles and a business plan for the Digital Health HUB

- Runs pre-production projects as pilots for different technical platforms and develops national research services

The act concerning the secondary use of social and healthcare data in 2018

- New national Permit Authority (THL)

- New legislation (GDPR compliant) enables the founding of a new Digital Health HUB that can combine data from different registries. This provides more opportunities for research and innovation.

The new Digital Health HUB in action in 2018

- A one-stop shop, which offers permits and access to data for research, big pharma and for wide use in the public and private sector

Percentage of respondents who considered it to be important or very important[Source: Survey made by TNS Gallup / Sitra 2016, link to Research outcomes]

Basic principles on the use of data

Percentages of those considered to be trustworthy or quite trustworthy[Source: Survey made by TNS Gallup / Sitra 2016, link to Research outcomes]

Trust in those who use my data

Percentage of those answering “Yes, my information can be used freely”.[Source: Survey made by TNS Gallup / Sitra 2016, link to Research outcomes]

For what purposes would you let your

unidentified activity data be used?

Who creates the health data in the future?

19901980 2015

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Health data collected by individuals /

unregulated data

Health data collected by

professionals / regulated data

A H I S T O R I C C H A N G E

Trust

A H I S T O R I C C H A N G E

From storing data to sharing data (human-driven control)

A H I S T O R I C C H A N G E

Time for GDPR 2.0?#IHAN

IHAN®

Our project aims to create an international standard that gives people control over how and what their data is being used for.

Think of it as a kind of IBAN (International Bank Account Number) for personal data.

I N T E R N A T I O N A L

H U M A N S ’ A C C O U N T

N E T W O R K

Establish key principles, rules & guidelines for human-driven data economy. Brand and build awareness and engage organisationsacross Europe to demand for fair data exchange standards.

Test, develop and scale standard to multiple industries and EU countries. Ensure interoperability through technology Proof-of-Concepts [ I H A N ® A P P R O V E D ]

Build Common Governance Model [ I H A N ® A P P R O V E D ]

Our project in nutshell

Antti Larsio 4/2018

From storing data to sharing data (with consent)

MyWallet

MyServices

MyLog

Authorization

All events of data transactions

will be sent to MyLog.

Requests

for data

Service

Service provider

Various services /

data providers

Alice

- Is able to make service requests and authorize service providers to utilise her data

- Can authorize other service providersto use data gathered by some other service provider

- Can cancel services at any time and request the service provider to forget her

- Can always see who is gathering or utilising the data

MANAGING SERVICES AND THE

USAGE OF DATA

Challenges with Social and

Healthcare Data:

• Huge amount of data is stored in

different organizations

• But the data can’t be shared

with other organizations/citizens

From citizens point of view:

• Citizen can’t easily authorize

service providers to see

collected health data

• Citizen can’t easily prohibit the

use of the data

• Citizens can’t easily authorize

someone else to take care of

their health care matters

Bob acting on behalf of Alice

- Is able to make service requests and authorize service providers to utilise her data

- Can authorize other service providers to use data gathered by some other service provider

- Can cancel services at any time and request the service provider to forget her

- Can always see who is gathering or utilising the data

SITRA SIDE EVENTS

HIMMS Europe Conference, Sitges

28.-29.5.2018

Sitra, Saara Malkamäki

Data

identifier

Orders and

messages

Chained

authorization

message

Application

interface

Distributed

log system

Smart

contract

structure

IH

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IH

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C O N C E P T & R E Q U I R E M E N T S

( I H A N ® B L U E P R I N T )

T E C H N I C A L I N D U S T R Y P I L O T S” I H A N ® A P P R O V E D P R O O F - O F - C O N C E P T ”

I H A N ® P R O T O C O L ( G D P R 2 . 0 )

” I H A N ® A P P R O V E D P R O T O C O L

S C A L A B L E , I N D U S T R Y - N E U T R A L , B A C K E D - B Y E U G O V E R N M E N T S ”

I N T E R N A T I O N A L A D V I S O R Y B O A R D

C L U B I H A N ®

We are looking for international partners!

@jsinipuro @sitrafund #IHAN

Thank you!

JAANA SINIPUROProject Director, Sitra More info on https://www.sitra.fi/en/topics/human-driven-health/