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Data sharingand how it’s changing healthcare
Asst Prof Matic Meglic MD PhD MBA
Strategy Director, Medtronic Hospital Solutions EMEA
@CONNECTED HEALTH & MEDublin, Nov 24 2014
Patient empowerment
ENA
BLER
EHR Clinicalknowledge
CARE
ContextualKnowledge
Digitizedself / PHR
INFLUENCE
ENABLER / DISINTERMEDIATION
DO
Key change drivers / enablers in healthcare
and their implications in healthcare:
• Affordable Technology• Connected 24/7• The quantified self• Big Data & Open Data
• The empowered patient• Personalized medicine• New ePublicHealth paradigm
Patient empowerment
EHR Clinicalknowledge
CARE
ContextualKnowledge
Digitizedself / PHR
INFLUENCE
ENABLER / DISINTERMEDIATION
DO
Empower to discover
• PatientsLikeMe• Frost et al. JMIR 2011• taking certain drugs “off-label“
with higher perceived efficacy• side effect of amitriptyline (dry
mouth) as the purpose for taking the drug (e.g. to treat excessive salivation).
ePublicHealth paradigm change
• Personalisation of public health
• Infomediation (and consequent patient empowerment)
• Infodemiology, infoveillance
Personalized medicine
ENA
BLER
EHR Clinicalknowledge
CARE
ContextualKnowledge
Digitizedself / PHR
INFLUENCE
ENABLER / DISINTERMEDIATION
DO
Based on this personalized profile …• Find the most similar patients (or dynamic cohort) from entire population• Analyze the attributes and outcomes for this cohort (across 30,000+ dimensions)• Predict the probability of the desired outcome for patient in question• Suggest a personalized care plan based on the unique needs of this patient
Desired Outcomes
Historical Observation Window Prediction Window
This Patient’s Longitudinal Data Predicted Outcome For This Patient
Dynamic Cohort Longitudinal Data with Outcomes
Patient Similarity Analytics © JCrawfordIBM
Treatment EfficacyIdentifies the outcomes of drug treatments prescribed to groups of similar patients.
© JCrawfordIBM
So the clash of the titans is not (just) about data..
• Google Health Kit
• Apple Health Kit
• Microsoft Health & HealthVault
• Truckloads of new smart devices (wearables, implantables, ‘dissolvables’, ‘invisibles’) – for lifestyle and healthcare use.
• Analytics and prediction based on your health data:– At physician’s office
– On your smartphone
Influencing behaviour
ENA
BLER
EHR Clinicalknowledge
CARE
ContextualKnowledge
Digitizedself / PHR
INFLUENCE
ENABLER / DISINTERMEDIATION
DO
Influencing behaviour
Consumerism
Games, Social networks
Healthy lifestyle, Chr Dis Mgmt
Azmo the dragon
And the final element!
ENA
BLER
EHR Clinicalknowledge
CARE
ContextualKnowledge
Digitizedself / PHR
INFLUENCE
ENABLER / DISINTERMEDIATION
DO
Caution is however needed..
• Hacking attacks on remote devices
• Example of Melanoma Apps
• Access control breach
Health Data Landscape
• ‚Open‘ data (alltrials, care.data, number of pharma initiatives)
• Pharma 3.0 (E&Y report)
• US HIPAA/HITECH, Accountable Care, Meaningful Use
• mHealth (recent green paper by EC)
• EU Personal Data Protection Regulation proposal
• EU Cross-border Health care Directive (Art. 14)
• EU eHealth Network Guidelines & Multi-Annual Work Plan
• EU H2020 & AAL
• EU: eHN, eHGI, IHI, etc. epSOS, SHN, EXPAND, PARENT…
www.patientregistries.eu
PARENT – cross-border PAtient REgistries iNiTiative
Incl. partners from Ireland:
www.patientregistries.eu
PARENT Joint Action tackles the unclear EU Registry Landscape
• Where are the patient registries?
• Can we access their data? (for Public Health, Research)
• Do we understand the data in the same way?
• Processes to exchange data?
• Then provide tools to answer these Qs.
www.patientregistries.eu
Two key use cases are supported.
Use case 1:
• Help existing and new registries to be more interoperable (Guidelines, best practices, CDS, SW)
• Assess Interoperability of these registries/data sources (Assessment Tool)
Use case 2:
• Ability to identify registries/data sources (PARENT Registry of Registries)
• Provide search & retrieval and maintenance of (RoR) metadata from these registries
• Support exchange of data across registries (Querybroker)
www.patientregistries.eu
Knowledge Management Platform
PARENT Framework
Guidelines, Recommendations,Methodologies
Services, SW tools repository
Best practices
Registry ofRegistries, Assessment Tool
Commoninformationmodel, ontologies, vocabularies
Delivering PARENT
www.patientregistries.eu
Scenarios and use of PARENT results
• ESC: switch from their own RoR to PARENT RoR
• Arthroplasty: EAR collecting data from registries for safety analysis
• MoH Slovenia (2014): use RoR for assessment of RD registries
• Valdoltra hospital Slovenia (2015): National registry for arthroplasty using PARENT Framework
• Contributing to (2015): Irish Epidermolysis Bullosa Registryand International Severe Acute Eczema registry
www.patientregistries.eu
Who benefits?
EC
JRCERN
MS
ERNERNRegistryholders
HealthAuth.
Pharma&DeviceIndustry
Insurers
Researchorganizat
ions
Accessto data
Qualityof data
Reducingbarriers fordata re-useAccess to data
GuidelinesComparisonIT tools
Pharma&DeviceIndustry
Researchorganizati
ons
xxxxx
HTA authorities
(MS andEC)
www.patientregistries.eu
Future vision
• PARENT Guidelines and IOp assets– Serve as a fundamental layer for secondary use of registry data: build
registries, search for data, retrieve data.
– Formally adopted by MS and EC initiatives (Safety, HTA, Post marketing, etc.)
– Sustainable and further developed using a combination of biz models (EC, MS, market)
• Patient focus (PROs, care&outcome benchmarking -> future: patients request enrolment.
Hospital Solutions: Developing services and solutions spanning the care continuum and grounded in our therapies
• Predictive analytics
• Patient screening
• Patient diagnosticsDis
eas
e
Man
age
me
nt
• Remote monitoring
• Patient follow-up
and support
• Track disease progression
• Patient outreach
• Patient education
• Patient referral
Patient
Identification
Patient
ActionPatient
Management
• Core Medtronic therapies &
clinical support
• Care pathway management
• Process excellence
/ lean sigma
• CathLab managed services
Therapy
Delivery
Question 2- How can technology support people as they age?
Cardiocom: over 80.000 patients served daily in US
COPD pilot in UK:
• 24% reduction in GP appointments
• 62% of patients having more confidence to self-
manage
their COPD trigger symptoms.
• 97% patient satisfaction rate
• 94% service compliance rate
Now looking to scale up to a system wide deployment in
order to deliver wider benefits.
Lessons learnt:
• HC change: build platforms to connect all stakeholders
• HC sustainability: Patients are a very valuable resource
• Provide smart incentives tied to performance and outcome indicators
• Data, registries: it’s a long-distance race.
To build future-proof healthcare:
• Empower patients (access to own data & context knowledge for decision making)
• Use data smartly (context)
• Change design of health care system (patient at the centre, stepped, coordinated care; IT tools; process thinking)
• Open data (but cautiously)
www.patientregistries.eu
EU registries in future:
• Central authorities:– Registry methodology and reusable IT assets (e.g. CDE)– RoR– Audits&benchmarking
• Shared data use model with the industry that drives..• Sustainable funding (combo of gov. & industry)• Patient as stakeholder: PROs/PROMs; integration with
PHR (and of course EHR)