Trillium Bridge: Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary
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Standards as Infrastructure for Innovation
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Digital Enlightment Forum: Towards a European ecosystem for health care data
Presentation of eStandards/Trillium II at the workshop of the Digital Enlightment Forum
1. Towards a European ecosystem for health care data
eStandards as infrastructure for innovation
Catherine Chronaki
Secretary General
HL7 Foundation, Brussels, Belgium
Contact: euoffice@HL7.org
Funded under
H2020-643889
2. 2
HL7 Foundation:
who we are..
HL7 the best and most widely-used
eHealth standards since 1986
HL7 v2, Clinical Document Architecture, HL7 FHIR
19 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-): eHealth Week
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 Enlightment Forum: Towards a European Ecosystem for Health Care
3. Forces facing health systems: technology
•Rapid progress in analytics and digitization
•Innovation in medicine
4. Digital Single Market –
digital health priorities and challenges
Pillars of digital transformation in health and social care
Give citizens better access to their health data everywhere in the EU
Connect and share health data for research, faster diagnosis, and better health
outcomes
Use digital services for citizen empowerment and person-centered care.
Challenges
Risks of privacy breaches (65.89%)
Heterogeneity of electronic health records (58.24%)
Cybersecurity risks (54.42%)
Lack of technical interoperability (48.46%)
Data quality and reliability (45.32%)
Lack of infrastructure (44.02%)
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
5. 5
eStandards can unlock data
for trust & flow
Today: Massive health data accumulated in silo EHR systems for documentation
Need to move from passive documentation to active use of information and knowledge creation:
activation!
Patient summaries defined at the macro level for cross-border exchange for emergency or unplanned care
at a national level.
Need to address communities and individuals!
Standards and profiles address a predefined exchange of information.
Need flexible use of available content and structure, recognizing national, regional or local jurisdictions:
trust & flow!
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
6. 6
eStandards Project Highlights
Problem: Standards roadmap to support large-scale eHealth
deployment
Ambition: Re-establish SDOs as the authority and
shepherd of high quality widely-adopted standards
that advance cost effective sustainable interoperability.
Key outcomes:
Co-creation,
Governance,
Alignment Framework
eStandards lifecycle model
Best practices today in health data exchange
Next steps:
eStandards workshop as part of the
JIC meeting in London, Nov 2017
Engage stakeholders eHealth Stakeholder Group
Digital Enent Forum: Towards a European Ecosystem for Health Care
7. 7
eStandards project vision is that of a global eHealth ecosystem
Where:
people have navigation tools for safe and
informed health care
interoperability assets fuel creativity,
entrepreneurship, and innovation
eStandards:
nurture digital health innovation
strengthen Europe’s voice & impact
enable co-creation and trusted
provider-user relationships
www.estandards-project.eu
Roadmap available at:
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
Source: eStandards D3.1
8. 8
Making Digital Work for health
with Trust and Flow
Co-create
to make it real using
standards
Governance
to make it scale for
large-scale deployment
Alignment
to make it flourish in a
sustainable way
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
http://www.hl7.org/fhir
9. 9
Patient summary as Health data navigator
Think of the Patient summary as a window to a person’s health or dashboard:
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 Enlightment Forum: Towards a European Ecosystem for Health Care
10. 10
International Patient Summary
(IPS) Implementation Guide: Purpose & Scope
Goal: identify the required clinical data, vocabulary and
value sets for an international patient summary.
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.”
The primary use case is to provide support for cross-border
or cross-juridictional emergency and unplanned care:
Cross-jurisdictional patient summaries (through
adaptation/extension for multi-language and realm scenarios,
including translation).
Emergency and unplanned care in any country, regardless of
language.
Value sets based on international vocabularies
that are usable and understandable in any country.
Data and metadata for document-level provenance.
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
11. 11
What is FHIR?
Based on a set of modular components - “Resources”
Resources refer to each other using URLs
Small discrete units of exchange with defined behaviour and meaning
Have known identity and behaviour
Extensions permit adding data not part of core
Resources are combined into “Profiles” to solve clinical & admin problems
Parties exchanging data define the specifics of using resources
and their relations using Profiles.
Profiles are the framework for defining services.
Test data and servers are available
Exchange resources between systems
Using a RESTful API (e.g. web approach)
As a Bundle of resources (messages, documents)
Positives
Service driven - composition
Modify components with changing need
Portability of components by moving code with the data
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
Modified from: Ed Hammond
2016
Let’s have a look: https://www.hl7.org/fhir/
12. 12
Patient History: Resource explorer
Click on instance to see details
Source from David Hay
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
Implementation
Global
Free
13. 13
Emergency department as decision environment
High decision density
Decision fatigue
Throughput pressure
Wide range of illnesses
Diagnostic Uncertaintly
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%
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
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!
14. 14
Emergency data sets
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
http://aktin.art-decor.org
source: Kai Heitmann
https://tinyurl.com/y7assld4
15. • Quality assurance
• Health goals
• Early warnings
Can we use patient summaries to unlock patient data?
16. 16
Can Patient summaries leverage HL7 FHIR
to unlock the power of data and drive our digital future?
YES, HL7 FHIR is part of the solution
It opens a window, but It takes a village…
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
17. 17
What do we need to make it happen
with standards and interoperability?
Co-create
make it real by standards
Governance
scale for
large-scale deployment
Alignment
flourish in sustainable ways
Digital Enlightment Forum: Towards a European Ecosystem for Health Care
Good morning, ladies and gentlemen.
How we can use patient summaries / medical histories/ data in the emergency room to improve decision making: quality and speed?
The transparency into care dlivery performance makes possible very different payment and risk intermediation models: expansion of episode and bundled payment modesl, incentives baded on population health, complete capitated risk, transfer levels of financial risk to providers.
Potential for transparency in the care delivery performance can test bundled payment modes, incentives based on population health, eliminate 30 day -readmission costs
Wearable trackers quantify personal activity generating valuable data for private payors: measures collected, fully automated visualization and longitudinal evaluation, comparison with family, friends, and the online community.
AXA partner with Samsung to provide discounts for healthy behavior
John Hancock uses fitbit for life insurance offering 15% discound
Generali uses discovery health, and offers vouchers and gifts for activity and prevention exams
Systems of record – SQL / CDA/CCD /
Systems of differentiation – IHE Profiles / PCHA/Continua Profiles
Systems of innovation – FHIR / OpenEHR Archetypes
Data drive a wave of automation aspiring to improve care
forge connections of health & wellness, medical research, and clinical decision support.
Healthcare systems can rely on digital technologies to
sustain costs, improve access, provide quality care facing dwindling resources and increasing demand
offer mobile patient- and provider-facing apps
mix patient-generated data with provider medical notes
use data to shape personalized care pathways
provide just-in time access to health services in person or online
Health information technology standards are at the core of the compass, to tap the potential of shared aggregate data and sustain trust.
At a rapid face of just-in-time disruption, Standards Developing Organizations need to cooperate
to deliver quality, interoperability, and knowledge timely at an affordable cost.
to look outside
to listen to the users
to rethink standards and tools that support their full lifecycle
To deliver live eStandards
a digital health compass can support safety, prevent harmful events, and assist in managing efficient, connected services of high quality and relevance in the digital health ecosystem. Health data standards, open interfaces, and a culture of sharing increase trust. Complementary initiatives to health information technology standards are the Dublin Core Metadata Initiative (DCMI) headings, the HONCode labelling online health resources, and W3C guidelines for usability and accessibility building confidence in navigation.
Health information technology standards are required to provide common metadata about digital health products and assemble fragmented information scaling up and sustaining digital health literacy [5, 9]. Standards developing organizations work together on standards to meet the health information needs of people within and across health facilities. The value of data and the increasing focus on patient experience, dictates global cooperation on open standards emphasizing mobile use.
To develop, deliver, test and deploy standards sets which are properly adapted to a dynamic healthcare system, we need a constant flow of interaction between three types of activities:
Co-creation between all relevant stakeholders
to make it real using standards
A supportive and appropriate governance system
to make it scale toward large-scale deployment
The flexibility to adapt and align as needs and requirements change
to make it stay in a sustainable way
.Establishing incentives for high quality recording or assembly of patient summary data can directly improve data insights guiding interventions with direct impact on increased productivity, and patient satisfaction. Note that the concept of health system navigators is not new. It was first introduced by Harold Freeman in 1990. Assisted by medical students, patients are able to navigate the logistical, emotional, and frequently cultural barriers of receiving care. Patients are assisting in assessing the situation and choices, articulate objectives, evaluate alternatives and reach decisions. In the end, healthcare is analog and human touch is paramount. Digital health tools can help fill the intention gap!
http://www.hpfreemanpni.org/
30% cognitive decline, Decision ; rational mind observing your intuitive mind…
Dual process: analytical and intuitive thinking
This workshop will:
Introduce the aims of the Trillium II project
Present approaches from three different countries: Denmark, USA
Collect input on the International Patient Summary among participants
Open a discussion on how to assess, bridge and harmonizing relevant initiatives around the globe in an effort to attract new members to GC-DHIP and create a network effect that will nurture innovation and fuel creativity with global standards serving as infrastructure for interoperability.
To develop, deliver, test and deploy standards sets which are properly adapted to a dynamic healthcare system, we need a constant flow of interaction between three types of activities:
Co-creation between all relevant stakeholders
to make it real using standards
A supportive and appropriate governance system
to make it scale toward large-scale deployment
The flexibility to adapt and align as needs and requirements change
to make it stay in a sustainable way
Co-create: identify situations of patient summary use beyond emergency and unplanned care
Bridge: patient summary projects and initiatives identifying good and bad practices
Validate: Develop, Collect, Assess learning resources to validate content
Engage: mobile Health community to foster innovation & inform health policy
Contribute: feedback to standards organizations improving patient summary standards
The purpose of the Global community for digital health innovation practice is to identify relevant projects and use cases of interest that will help validate and promote the use of international patient summary standards in demonstrations, readiness exercises, and other pilot projects.
Founding members of GC-DHIP are members of the Trillium-II consortium that have committed to pilot project demonstrations.
Additional organizations and pilot projects implementing patient summaries are invited to join.
eHealth programs of Luxenburg (eSante), Catalonia, Spain (TicSalut), Denmark (MedCom), Portugal (SPMS), Sequoia (US), HSPC (US) are part of the steering committee of GC-DHIP and Henrique Martins, is the first chairman.
The community has also close connections to the eHealth Digital Services Infrastructure services established under the Connected Europe Facility.
Why join?
Be part of a global community and exchange knowledge with other countries
If you know about Patient Summaries
If you are curious about Patient Summaries
If you want to influence an International Patient Summary
If you want to be part of an international effort with local impact