International Patient Summary Standards for Global Health: driver for the digital health systems of the future

Catherine Chronaki Secretary General

HL7 Foundation, Brussels, Belgium

Contact: euoffice@HL7.org

Funded under H2020-727745

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HL7 Foundation: HL7 the best and most widely-used

eHealth standards since 1986

HL7 v2, Clinical Document Architecture, HL7 FHIR

20 National Affiliates in Europe (~38 wordwide)

European HL7 foundation established in 2010

European Funded Research Projects

eHGI, Antilope, Semantic Healthnet,

Trillium Bridge, Expand, Trillium-II

PHC34: ASSESS CT, OpenMedicine, eStandards

Annual HL7 in Europe Newsletter

Website: www.HL7.eu

eHealth policy & Research

eHealth stakeholders group; mHealth Guidelines;

ENISA expert group

EFMI council (2012-): EFMI Board (2016-)

HIMSS Europe

SDO Joint Initiative Council

HL7 Vision: A world in which everyone can securely access and use the right health data when and where they need it.

Digital Health Systems of the Future, WHO Europe

February 8, 2019

European Federation for Medical Informatics (EFMI) - Mission

• The mission of EFMI, Europe's leading European medical informatics association to advance theory and practice of Information Science and Technology within Health and Health Sciences

• EFMI was established in 1976

• represents 32 countries in the WHO Europe area

• promotes research and development and high standards in the application of medical informatics in Europe

Digital Health Systems of the Future, WHO Europe February 8, 2019 3

EU Horizon 2020 GA 727745

Mission EU/US Memorandum of Understanding Roadmap 2016

“To support an innovative collaborative community of public- and private-sector entities working toward developing, deploying, and using eHealth science & technology: to empower individuals

to support care

to advance clinical outcomes

to enhance patient safety, and

to improve the health of populations.”

Critical Levers: International interoperability

workforce development

innovation ecosystems

February 8, 2019 Digital Health Systems of the Future, WHO Europe 4

EU Horizon 2020 GA 727745

The story began with epSOS…can trans-European patient summaries be understood across the Atlantic?

Gap analysis

Compared patient summary specifications in EU/US

Shared clinical elements: problems, medications, allergies

Interoperability Assets

Established a terminology prototype CTS-2 service: http://extension.phast.fr/STS_UI

Developed Transformer of Patient summaries: http://informatics.mayo.edu/trillium-bridge

Mediated Differences in EU/US IHE XCPD/XCA profiles for Patient Identity and Document Query/Retrieve

Validation activities: 4 EU countries/ Kaiser Permanente

EU/US Marketplace; HIMSS 2015; IHE Europe Connectathon 2015, eHealthWeek 2014,15

Feasibility study:

Reflected upon standards, cross-vendor integration, incentives, clinical research,

security and privacy, innovative business models, education

Recommendation: “Advance an International Patient Summary (IPS) standard to enable people to access and share their health information for emergency or unplanned care anywhere and as needed. At minimum the IPS should include immunizations, allergies, medications, clinical problems, past operations and implants.”

EU Horizon 2020 GA 727745

Ambition for International Patient Summary

Scaling-up the use of patient summaries

In case of Emergency, the IPS is there in our mobile

phone and can be understood anywhere in the

world

Emergency response teams can use aggregated IPS

to capture the needs of a community or refugee

camp in the aftermath of a disaster.

February 8, 2019 Digital Health Systems of the Future, WHO Europe 6

Trillium-II’s ambition touches the person through their personal hub and the community through an aggregating dashboard making the most of our data-driven economy.

EU Horizon 2020 GA 727745

What about international patient summary (IPS) standards ?

Highlight the social value of patient summaries and health data

Contribute to their Governance of IPS specifications

Develop, Collect, Assess learning resources

Foster innovation & inform health policy

Collaborate across standardization bodies

Bridge grassroot patient summary initiatives

Engage mobile Health companies & app developers

Establish a Global Community of Practice

for Digital Health Innovation using International Patient Summary Standards (IPS)

February 8, 2019 Digital Health Systems of the Future, WHO Europe 7

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Patient summary as Health data navigator

Think of the Patient summary as a window to a person’s health or

dashboard to support actors in a person’s health and care:

Medications, allergies, vaccinations, problems and procedures,

labs, diagnostic imaging, recent or planned encounters, implantable devices

advance directives

“Bring the Power of Platforms to Health Care” using data to drive:

administrative automation, networked knowledge, and resource orchestration [Bush & Fox,

HBR November 2016]

eStandards need to

help build trust

unlock the power of health data

facilitate decision support

navigate the health system

Digital Health Systems of the Future, WHO Europe

February 8, 2019

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APIs in healthcare open ways so that:

Citizens access their health data on the phone through transparent

agreements of handset manufacturers and providers

Citizens can make their own data available for further care

Patient data are used to develop services for patients to

manage their health, make better care and informed choices.

digital health advisors that can respond to consumer questions based on

users’ unique health care data and informed by

artificial intelligence, e.g. symptom checkers

Gadgets/ apple watch wrist band

Telemedicine – remote diagnosis – citizen science

Digital health literacy, education for patients with chronic disease

Digital Health Systems of the Future, WHO Europe

HL7 FHIR: key to value based care

February 8, 2019

HL7 Int. and CEN/TC 251 agreement (April, 2017)

Digital Health Systems of the Future, WHO Europe

Vision

• “In order to further the care for citizens across the globe, we agree to collaborate on a single, common International Patient Summary (IPS) specification that is readily usable by all clinicians for the (cross-border) unscheduled care of a patient.”

Scope

• “The IPS specification shall focus on a minimal and non-exhaustive Patient Summary, which is specialty-agnostic and condition-independent, but still clinically relevant.”

Implementable

Applicable for global use

Extensible and open

Sustainable IP

S Prin

ciple

s

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CEN-HL7 Agreement:

International Patient Summary Project Deliverables

eHN EU PS

Guidelines

CEN/EN 17269

IPS

CEN/TS 17288

IPS

HL7 IPS

CDA IG

HL7 IPS

FHIR IG

refer refer

implement implement

Provide EU IG

refine

HL7 Int. & CEN/TC 251 agreement (April, 2017)

European

Vaccination Card

EHN: Patient’s rights

to cross-border care

EUMODEX2018

Disaster medicine

and emergency

Response, Oct 14-16,

Romania

Digital Health Systems of the Future, WHO Europe

EU Horizon 2020 GA 727745

Uses of the IPS through a personal lens

Listening to the patient and the family

Quality assurance: medication reconciliation by the family

Health goals: tracking progress and identifying health trends

Early warnings: frailty in the elderly

Navigating digital health data: portability, trust, and flow

Tracking hypertension: Chronic disease management

Rare Disease Passport: patient summaries for patients with rare diseases

European Vaccination Card: Vaccination of children in communities and refugee camps

Survivor passport: Survivors of childhood cancer

Mother / Child Summary: fertility, pregnancy, child birth, infant home records

Tracking the health needs in communities

Disaster and emergency management

My Healthy neighborhood

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Advancing adoption of the IPS

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Building FHIR IPS “library”

Extending the scope of patient summaries beyond

emergency/unplanned

Refine the IPS components, with the knowledge gained

from the project.

Disaster Management

Survival Passport

Vaccinations Frailty

Child Health

Chronicity

RD-Passport Vaccination Card

FAIR research

study

Building blocks of the International Patient Summary standards and beyond

Encounters

Trillium II IPS

Subject

Author

Attester

Custodian

Medication Summary

Allergies and Intolerances

Problem List

Immunizations

History of Procedures

Medical Devices

Diagnostic Results

Vital Signs

Past History of Illness

Pregnancy (status + history summary)

Social History

Functional Status (Autonomy/ Invalidity)

Plan of Care

Advance Directives

„Header“ Required Recommended Optional Optional

February 8, 2019 Digital Health Systems of the Future, WHO Europe 14

as a document

Current Intended Use Expected Future Use

as a document and as a toolset for digital health systems

International Patient Summary Supporting the EHRxF

1. The IPS document

2. The IPS data blocks

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eStandards Roadmap: co-creation governance alignment

• Trust and Flow: the basis of well-functioning digital health systems

• eStandards digital health Compass: Respect for perspectives of stakeholders

• eStandards Roadmap Components: reusing eHealth artefacts

• Co-Creation, Governance, Alignment: bringing them all together

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Digitization in the Emergency Department: A harsh and complex collaborative decision environment

• High decision density

• Decision fatigue

• Throughput pressure

• Wide range of illnesses

• Diagnostic Uncertainty

• Narrow time windows

• Interruptions and distractions

• Shift work/sleep disruption

• Shift changes

• cognitive decline at the end of a shift 30%

• Diagnostic Error in ED

• Radiology 5%

• Missed injuries 12%

• Cardiovascular 19%

• Respiratory 30%

• Overall ~16%

Source: Dr. Pat Croskerry, Emergency London; https://www.youtube.com/watch?v=GFE6D5460oE

It’s not about what we know, it’s about how we think!

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Trillium II Prize

Digital Health Systems of the Future, WHO Europe February 8, 2019 18

Useful Links

• https://simplifier.net/TrilliumII/ • https://simplifier.net/TrilliumII/~resources?category=Profile

• https://simplifier.net/TrilliumII/~resources?category=Example

• https://simplifier.net/TrilliumII/~resources?category=Extension

• https://art-decor.org/art-decor/decor-project--trilm2- • https://art-decor.org/art-decor/decor-datasets--trilm2-

• https://art-decor.org/art-decor/decor-scenarios--trilm2-

• https://art-decor.org/art-decor/decor-valuesets--trilm2-

• https://github.com/gcangioli/trilliumII

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