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Data sharing and how it’s changing healthcare Asst Prof Matic Meglic MD PhD MBA Strategy Director, Medtronic Hospital Solutions EMEA @CONNECTED HEALTH & ME Dublin, Nov 24 2014

Connected Health & Me - Matic Meglic - Nov 24th 2014

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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

Agenda

How data

enables

empowerment

What’s nextPatient registries

In EU

Traditional care model

EHR Clinicalknowledge

CARE

Patient engagement

EHR Clinicalknowledge

CARE

DO

Patient empowerment

ENA

BLER

EHR Clinicalknowledge

CARE

ContextualKnowledge

Digitizedself / PHR

INFLUENCE

ENABLER / DISINTERMEDIATION

DO

The paradigm shift towards empowerment requires e/mHealth as an enabler.

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

Not always, not for everyone

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.

What prevents people from ageing well?Navigating the health system pain points

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.

Conclusions

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)

Thank you for your attention!

[email protected]

@matic_meglic