Towards Health Data Democracy

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Theresa Mary Stevens
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1 Towards Health Data Democracy Bian Yang, Assoc. Prof., Dr., ehealth and Welfare Security group (ehws) at CCIS, Department of Information Security and Communication Technology Norwegian University of Science and Technology (NTNU)

2 Critical Infrastructure Security and Resilience Information Security and Privacy Management Cyber Defence CCIS e-health and Welfare Security Centre for Cyber and Information Security NTNU Digital Forensics Group Norwegian Biometrics Laboratory 2

3 The ehealth and Welfare Security Research Initiative at CCIS / NTNU - Established ehws June Strategic funding from Helse- og omsorgsdepartementet - Collaboration with Direktoratet for e-helse and Sykehuset Innlandet - Members: 17 NTNU staffs + 18 external advisors 3

4 Research Areas Health data infrastructure for secure and incentivized data sharing Health data security and privacy Medical device security Biometrics for secure and convenient identity management and access control Smart building and living Socio-technical challenges and solutions 4

5 Research Activities Health data infrastructure and data sharing incentive schemes NFR IKTPLUSS "HealthDemocratization" ( ) NTNU Digital Transformation: Blockchain ( ) GDPR regulatory compliance NTNU-CCIS: ecop platform (2017-) Privacy-preserving biometrics and identity management FP7: TURBINE, FIDELITY, PIDaaS, ORIGINS H2020: SMILE RCN-RFF: ID4U, FingerKeyBox Innovation Norway: ABCHealth for Inland Hospital Access Control Behaviour understanding and behaviour change NTNU DT: biometric approach to behaviour understanding ( ) 5

6 Project HealthDemocratization New IKTPLUSS project ( ) 27 million NOK 11 partners Coordinator: NTNU-IIK ehws Idea: health data right management and computational negotiation across different parties 6

7 More and more health data Royal Free London NHS trust sharing data with Google Deepmind via App Stream for direct clinical care Facebook May Be the Next Tech Company Collecting Your Health Data 7 Google smart home - IoT and smart sensors to collect personal data

8 Who Really Owns Health Data? Many patients willing to share but not technically have their data under controll Health organizations hesitant to share due to risk of data breach, cost in negotiating, and difficulty in technical compatibility and security Data industry (Facebook, Google, Amazon, etc.) encouraging to share due to their commercial interests Academia not incentivised to share as researchers are not rewarded 8

9 What is Democracy? "Democracy is a system of processing conflicts in which outcomes depend on what participants do, but no single force controls what occurs and its outcomes." - 9

10 Understanding Health Data Democracy Scenario 1 Patients fine control of their health data Hi, Facebook, I want this data from me: - anonymized and shared with FHI for free for unlimited time - pseudonymized and shared with IBM Watson Research trading for their personal heath analytics services shared with plain identities with NTNU HUNT for free Traded to Google deepmind for kr. 10

Understanding Health Data Democracy Scenario 2 Patients fine consent management Hi, Inland Hospital, I allow you to: - share this data with any norwegian

11 Understanding Health Data Democracy Scenario 2 Patients fine consent management Hi, Inland Hospital, I allow you to: - share this data with any norwegian non-profit research institute for scientific purpose for free - share this data for the first-aid team during my emergency without needing my separate consent 11

12 Understanding Health Data Democracy Scenario 3 Tools for computational negotiation I want profit from data Data vendor I want more direct benefit by sharing data Scientist AI based rights negotiation and recommendation platform I want access to data for research We encourage regulatorily compliant data sharing I want access to data Municipality for clinical use 12 Patient Hospital

13 Rights and Obligations instead of Ownership GDPR does NOT define "ownership" but only Rights and Obligations for involved parties. However, As a regulation, GDPR does not tell us how to manage rights and obligations. 13

14 A Democratic Approach The project HealthDemocratization aims at a "free-trade" like data sharing protocol Each party can prove and negotiate the rights, benefit, and obligations at equal stance Each party can follow the same protocol for data sharing without discrimination Each party can configure their data sharing policy automatically and intelligently Each party can share the profit from data use in a secure and trusted way 14

15 15 A Democratic Approach

16 A Democratic Approach Demo1: cross-health-authority trust chain for data and device provenance and health notary Demo2: privacy-preserving health data outsourcing and rights management Demo3: patient-centered data management: portability, risk-and-incentive-based smart consent and rights negotiation, smart contract for data sharing or trading for profit / benefit Demo4: Token economy ( health credit ) based incentive scheme 16

17 17 Collaboration

18 Contact Einar Snekkenes Prof. Dr., NTNU Gjøvik Bian Yang Assoc. Prof. Dr., NTNU Gjøvik 18

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