digital health revolutiondigitalhealthrevolution.fi/uploads/2/4/1/5/24155377/dhr_062016.pdf ·...
TRANSCRIPT
Our vision
“Your digital traces are health related – we’ll give them value”
“Future healthcare will allow citizens to
control and make use of their personal data
to improve their overall health and wellness”
Challenge today
Digital data is easily captured but does not bring benefits across silos
Our solution
Personalized, predictive, preventive, participatory serviceecosystem with modern data management system
MYDATABASED SERVICES
Digital Health Revolution
MAKING VALUE OF PERSONAL ANALYTICS
CONNECTINGDATA TO SERVICES
LIBERATING DATA
MYDATA
Human-centric personal health data management and re-use
- new tools for self-management of health and wellbeing
• MyData infrastructure = technological solutions
• MyData services = utilization of personal data
• MyData Alliance = network for company collaboration
Digital Health Revolution (DHR)Unique approach for utilisation of personal data in future service structures
We study:
• The transformation in personal data management models
• Different sources of data from genome to digital footprint
• Enabling data transfer across systems and services
• Construction of service concepts via research pilot/use cases
• Business models
• Roles and participation of consumers
• Creation of MyData ecosystem
DHR proceeds with MyData approach...
...to create human-centered data management
and processing with service development.
Images from Poikola, Kuikkaniemi & Honko 2015: http://urn.fi/URN:ISBN:978-952-243-455-5
Roadmap
• MyData principles
established
• MyData architecture stack
defined and reference
implementation ready
• Methods for stakeholder
involvement and creating
common understanding
• Preparing research pilot
• Identifying relevant actors
(100+ organizations)
• Creating service scenarios
• National and international
benchmarking
• Important discussions
opened: ethical permission,
regulators
• Boosting the transformation
via multidisciplinary high
level research
• Support and learning from
use cases
• Carry out several use cases
to demonstrate the impact
and business potential in the
transformation
• Active and systematic
interaction with national and
international MyData actors
• User-centric design
• Implementing new action
models in data-driven health
and care in Europe
• International growth and
maturization of approach
• Model is supported in national
support and data management
structures
• Business-as-usual
• Growth in Data based
economy
• Opening up international
markets for SMEs
2014-2016 2016-2018 2018 +
DHR1 Clarity, tools & methods
DHR2Feasibility
POST DHR Growth
Governmental programme and answering to the digital challenge in the health field
"People’s right to decide about and monitor their personal information will be enhanced, while ensuring the smooth transfer of data between the authorities."
- Finland´s Governmental Strategic Programme May 29, 2015
MyData principles have been considered in national strategies, namely ICT2015 (by Ministry of Employment and the Economy) and Secondary Use of Own Health Related Data (by Ministry of Social Affairs and Health)
Ministry of Socials Affairs and Health strategy:
Information to support well-being and service renewal. eHealth and eSocial Strategy 2020.
Ministry of Transport and Communications: MyData principles
Towards MyData based health and wellbeing services
Spending in treatment
Same treatment to all
Reactive
Provider centric service development
Paper questionarys
Unidirectional information flow
Immature digital health market
Preventive
Personalised
Predictive
Participatory
eQuestionarys
Holistic health data view
Customer path changes in P4 model
Model for open data utilisation
EU general data protection regulation
Results
P4 health check-up pilot
Digital Health Revolution pilot study– Next Generation Health Check-Up and Systems Monitoring for
Personalized Wellness
Prof. Olli Kallioniemi
Riitta Sallinen, Anu Kiuru, Timo Miettinen et al.
• How to collect digital health and wellness
data?
• How to analyze such data?
• How to return key actionable data to people
in order to coach individuals towards better
health?
Healthquestionnaire
Health check-up
Clinicallab tests(blood, urine)
Feces samples→ 16S rDNA
Quantified selfmeasurements: Withings, Moves,RescueTime
Digitalfootprints:S Group, K-Plus
Saliva samples→ cortisol
99 participants (age 25-59)
GenomicsProteomicsMetabolomicsTranscriptomics
✓ Returningdata
✓ Coaching✓ Additive
sensors✓ Mobile apps
✓ Returningdata
✓ Coaching✓ Social
networking
Movement of samples and data to
biobank
✓ Returnigdata
✓ Activity tracker, Moves, RT
Prof. Olli Kallioniemi
Riitta Sallinen, Anu Kiuru, Timo Miettinen et al.
Digital Health Revolution pilot study– Next Generation Health Check-Up and Systems Monitoring for
Personalized Wellness
Technology and regulation
Authorising access to individual’s own health data will diversify as we’ll own multiple personal health data warehouses
Nationwide
PHR
National EHR
‘Kanta’
Minunterveyteni.fi
Austa
Data
Aggregation and
Brokering
Services
Duodecim
STAR
‘Omakanta’
MyData Viewer
Regional EHR
Router
App
App-specific
Data
Consumer
and Pro
Apps, N > 1
Regional Self-care Service
Portals
Portals of Occupational
Healthcare Services
Decisions Support
Systems and
Prevention-focused
AI
Personal
Carry-in-Pocket
PHR
Current data authorisation and consent model of Hämeenlinna city
Taltioni
Duodecim
EBMeDS
(Processor)Kanta
Consent
flow
Data flow
Source
Data using
Service
End-user
account
Minunterveyteni.fi
Web Platform
W2E
Elisa
Remote PEF
monitoring
service
Taltioni
Uoma
App
Duodecim
STAR web coach
‘eOmahoito’
self-care
query service
Omakanta
Effica
Polar, etc.
iOS
Health
App
Consent
Manager
ODA-project and nationwide PHR present the Step 2
OAuth authorisation
service for PHR and
ODA
Decision Support App
Virtual Wellbeing
Coaching Service
Health and
Wellbeing Query
Service
Kanta archive
Minunterveyteni.fi
Consent
flow
Data flow
Source
Data using
Service
End-user
account
Consent
Manager
Regional EHR National PHR
ODA
Decision Support
(Data Prosessor)
Elisa
PEF service
etc.
Digital H&W
Assessment Service
Omakanta
Viewer
ODA Service Pack
3rd Parties,
Commercial For-profit
Services
What could be done with a single, cross-sectorMyData Operator
Kanta Archive
Minunterveyteni.fi
Regional EHR
Omakanta +
National PHR
ODA-
Service Pack
Elisa
PEF tracking
etc.
National Genomic Centre
Data Lakes &
Healthcare Data Analytics
(Data Processors, not Controllers)
3rd Parties
Also other personal data sets
to empower and enrich new
prevention- oriented, data-
driven health management
Services
Polar, etc.
MyData
Operator
OmaTerveys
OmaMehiläinen
OmaDextra
...
Consent
flow
Data flow
Source
Data using
Service
End-user
account
Consent
Manager
GDPR MyData
HML/Heltti
consent as (one) ground architecture built on managing
consents
OK
data Portability
no obligation for tech compatible
systems, interoperable formats
“encouraged”
realising and promoting functional
APIs/interfaces as a goal
?
“by design and default” both control and transparency of
data usage is done human-centric
?
profiling and automated decisions
consequences, logic; explicit
consent as (one) ground
human-centric, multipurpose
profiles that data subject controls
?
Liability and penalties
compensation, admin fines, other
penalties
“privacy as a service”
common operational model
?
Health (and wellness) data
• GDPR Art. 4 (13-15)
•Johdanto-osa 35:
Health data = ”all data pertaining to the health status”; past/current/future; collected HC services (Dir 2011/24/EU); a number, symbol assigned to uniquely identify for health purposes; info from testing/examination incl. From genetic data/biological samples; info on disease (risk)/disability/medical history/clinical treatment/state independent of its source (health professional, hospital, medical device, in vitro test)
Access V portability
•understandable v machine-readable
•personal (request)/access v right to transmit/have transmitted
•regular basis (possible charge) v one time(?)/no hindrance
•all PD v PD concerning X, which X has provided to a controller/basis
•all controllers v NOT public interest task/exercise of official authority
-not truly reusable(?) v not dynamic
•GDPR: PD; ”provision”; legal basis (consent/contract)
•MyData: other than PD; ”account portability”
Access
• GDPR recital 63
“This includes the right for data subjects to have access to data concerning their health, for example the data in their medical records containing such information as diagnoses, examination results, assessments by treating physicians and any treatment orinterventions provided.”
“Where possible, the controller may provide remote access to a secure system whichwould provide the data subject with direct access to his or her personal data.”
Deletion (v lawful retention)e.g.Art. 17(3) GDPR ”to the extent processing is necessary”
c) ”for reasons of public interest in the area of public health” -> Art. 9(2)(h) and (i) and 9(3)
User experience
What we do
• Illustrate MyData use cases through concepts, designs and demos
• User research
• UI design + graphics
• Interactive demos
• Novel interaction techniques
• Service Design of holistic concepts
Niklas - Day-in-a-Life
Mobile App concepts
Collecting feedback from industry
• Mobile App concepts iterated and developed further in industry workshops
• Feedback from different stakeholders
• Brainstorming new business opportunities
Concept: Lasse Virtanen
• Wizard-of-Oz: Mock-ups of wearable sensors attached for ice hockey
equipment to analyzing different activities and movements.
• Oulun Kärpät U12 ice hockey team (player age appr. 12 yrs)
Other concepts, demos and studies
Augmented reality view to MyData Dual-sided tablet for doctor patient interaction
MyData future dentist
Other concepts, demos and studies
UI design
Switchboard Mobile Application Authorization UI
FIMM Dashboard UI Development
Analysis of 39
most popular
wellness apps
Deliverables
• 9 concept designs
• 10+ demos (research demos + UI demos)
• Three videos on service design cases
• UI design and graphics support to technicalWPs (e.g. switch board, dashboard, FIMM service UI)
• 12 publications
Wellness panel organized at MobileHCI’15
in Copenhagen
Health profile and MyData visualisation
MyData visualization for different stakeholdersPersonal Trainer
IndividualHealthcare professional
Timely information in right format• Holistic view• Anomaly detection• Detail discoveryVisualization tools supporting different stakeholders• Summaries for the individual – enabling taking
responsibility of own health• Professional decision support – individual and group
comparisons, facilitating team decision making• Personal Trainer – individual needs and potential for
behavior change
How do companies benefit? MyData Clinic supporting understanding of MyData transformation and value creation
Sauli goes to
occupational
health care
practice when
needed
Sauli gets
wellbeing
feedback and
guidance. Mobile
app guides him to
practice on
demand.
Sauli uses a wearable
provided by his
employer. The data is
also used by
occupational health
care.
Sauli´s boss gets a notification and report
if there are signs of nascent burn out in
the work community. In that case he´ll
immediately take measures to rectify the
situation.
Heltti & Affecto solution
MyData Alliance
MyData Alliance - Missio
MyData Alliance is open community of companies and
organizations, which advance MyData pilots and share knowledge
and resource. The aim is to develop national (internationally
scalable) interoperability model for personal data management.
MyData Alliance
mydata.fi
Alliance in the web: http://mydata.fi and a private LinkedIn discussion group
MyData based Relationship
Management
MyData for insurance and
financing
Personal
Analytics
Hyper-personalization
Data banking
Trusted
3rd Party
MyData Alliance Value Networks /
Focus Groups
MyData benchmarking
Alexandra Institute
Coelition
Cozy Cloud
Ctrl-Shift
Databox
Data Mixer
Digi.me
Digital Catapult
Fing
Forgerock
Healthbank
Lynkeus
Meeco
Midata coop
Mydex
MyWave
Open Notice
OpenPDS / MIT
Peercraft
Project Danube
Qiy
Sunderland City Council
Synergetics
Telefonica
Telekom Italia
Tisei
Warwick Hub-of-All-Things
Midata-project
Australia:
New Zealand:
MyData pioneers in Finland
Riitta Sallinen,
Minna Pikkarainen,
Services and [email protected]
Harri Honko,
Technology and [email protected]
Maritta Perälä-Heape,
Coordinating & Use [email protected]
Antti Poikola,
MyData Ecosystem [email protected]
Olli Kallioniemi,
Minna Ruckenstein,
Consumer [email protected]