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Reinforcing the Bridges and Scaling up
EU/US Cooperation on Patient
Summary
Trillium II
This project has received funding from the
European Union’s Horizon 2020 research
and innovation programme under grant
agreement No 727745
Standards Organizations:
Health Systems and Associated Competence
centers:
Dissemination and Networking:
Development and Evaluation:
Third parties
support
advance
enhance
improve
vaccinations
medications
encounters
Identification
allergies
Implantable
devices
Health
team
Security
preferences
problems
right and enabler of safe
care.
stakeholder groups to identify
needs
key enablers and success
educational and training material
• Quality assurance
• Health goals
• Early warnings
Can we use patient summaries to unlock patient data?
Reinforcing the Bridges and Scaling up
EU/US Cooperation on Patient
Summary
Trillium II
This project has received funding from the
European Union’s Horizon 2020 research
and innovation programme under grant
agreement No 727745
10
HL7 Foundation: who we are..
HL7 the best and most widely-
used
eHealth standards since 1986
HL7 v2
Clinical Document Architecture
CIMI
HL7 FHIR
19 National Affiliates in Europe (~38
wordwide)
European HL7 foundation established
in 2010
European Funded Research
Projects
Annual HL7 in Europe Newsletter
Website: www.HL7.eu
eHealth policy & Research
SDO Joint Initiative Council
HL7 Vision: A world in which everyone can securely access & use the right health data when & where they need it.
August 24, 2017
Hangzhou, China
Building a global community for digital health innovation: the role of patient summaries
The Use Case: what if you need care abroad?
• When patient needs unplanned care in another country, a
EHR summary fit for the purpose of safe and efficient
health care is available.
• After the health care encounter, patient receives encounter
report in a format and language that can be understood
back home.
• Addressed by European Union funded projects in cases of
unplanned or emergency care
- among European member states by epSOS (2008-2011) and eHDSI
(2017-2020)
- In the transatlantic setting by the Trillium Bridge project
(www.trilliumbridge.eu)
- Globally by the International patient summary implementation
guide.
European Patient Summary
Guidelines, Nov 2013, rev 2016
Country of origin
Country of
treatment
Clinical Records in the
Country of treatment
Contact Point for Patient
Summaries In Country of
Treatment
Translated/
Transcoded
EU Patient
Summary
Terminology
Services
Clinical Records in
the country of Origin
EU Patient
Summary
Contact Point for
Patient Summaries In
Country of Origin
Patient seeks unplanned care
where another language is
spoken.
EU Patient Summary Guideline
EU patient summary guideline defines patient summary as the
“minimum set of information needed to assure healthcare coordination and continuity of
care”
• Emergency or unplanned care refers to
“the range of healthcare services available to people who need medical advice, diagnosis
and/or treatment quickly and unexpectedly”
• Types of EHR summaries
• Emergency data set
• Continuity of care record
• Encounter report
• Discharge summary
• 2nd opinion
• Clinical patient summary
• Disease specific summaries
• Around the world many variants of the same basic types of patient summaries
• HL7 Consolidated CDA
• seven document types, seven of which were consolidated in CCDA
Results of Trillium Bridge 2013-2015
• 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 Patient summaries Transformer: http://informatics.mayo.edu/trillium-
bridge
• Identified Gaps in IHE profiles Patient Identity & Document Query/Retrieve
• Validation activities: 4 EU countries/ Kaiser Permanente
• EU/US Marketplace; HIMSS 2015; IHE Connectathon 2015, eHealthWeek
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.”
Comparison of EHR summaries
and the International Patient Summary bottom line
Allergies
Medications
Problems
Pregnancy History
Expected date of delivery
Vaccinations
Social History
Medical Devices
Vital Signs
Blood group
ProceduresAllergies
Problems
Immunizations
Procedures
(surgical )
Functional Status
(autonomy / invalidity)
Results
(blood group )
Social History Observations
(lifestyle history )
Vital signs
(blood pressure )
Medications
Pregnancy history
(expected date of delivery )
Advance Directives
Encounters
Family History
Payers
CCDPS
Plan of Care
(therapeutic recommendations )Medical Devices and Implants
• Same base Standard (HL7 CDA)
• Different philosophy: capture vs continuity of care
• Different IGs: C-CDA/CCD (US realm) vs epSOS IG
• Different technical approach: Open vs Closed Template
Transforme
r
(CTS2)
Trillium Bridge Provider-Mediated Exchange
Examples of most significant issues with specification alignment
• Certificates: Self signed for purposes of demonstration
• SAML: Differences in the requirements for eHealth versus epSOS implementation
• Patient Discovery: Demographics versus identifier based search
• Document Query: Difference in Class Code for Document Type used
• Document Retrieve: Country specific identifier is used to retrieve for epSOS
IHE
XCPD
IHE XCA
IHE
ATNA
(epSOS)
IHE
XCPD
IHE XCA
IHE
ATNA
(eHealth)
Trillium Bridge
Gateway
(epSOS Open NCP)
National
Contact
Point
The main question for Trillium Bridge..
• Can we convert a patient summary generated in the European Union
according to the EU Patient Summary Guideline to one useful in the USA?
• Our Action: Compared clinically, syntactically and semantically the
European PS (epSOS) and MU clinical summary (HL7 CCDA/CCD)
• Evidence: use specs & examples, carry out tests
• Two use cases:
- Provider mediated (citizen controlled, provider initiated)
- Patient mediated (citizen initiated, citizen controlled)
• Blazing the transatlantic path – constraints and assumptions
- Translation of narrative unstructured content (not in scope)
- Incorporate patient summary elements in EHR or PHR (not in scope)
- EU Citizens have access to their EU Patient Summary (e.g. epSOS)
- US Citizens have access to their Clinical Summary in C-CDA/ CCD
• Feasibility study: what have we learned and what are the implications?
Comparison of EHR summaries
and the International Patient Summary bottom line
Allergies
Medications
Problems
Pregnancy History
Expected date of delivery
Vaccinations
Social History
Medical Devices
Vital Signs
Blood group
ProceduresAllergies
Problems
Immunizations
Procedures
(surgical )
Functional Status
(autonomy / invalidity)
Results
(blood group )
Social History Observations
(lifestyle history )
Vital signs
(blood pressure )
Medications
Pregnancy history
(expected date of delivery )
Advance Directives
Encounters
Family History
Payers
CCDPS
Plan of Care
(therapeutic recommendations )Medical Devices and Implants
• Same base Standard (HL7 CDA)
• Different philosophy: capture vs continuity of care
• Different IGs: C-CDA/CCD (US realm) vs epSOS IG
• Different technical approach: Open vs Closed Template
Section Comparison
epSOS/EU Directive
EU Patient
Guidelines epSOS PS CCD
Section Optionality Optionality Optionality Optionality
Allergy R R Allergies R
List of current medicines R R Medications R
List of current problems /
diagnoses R R Problem R
Surgical Procedures prior to
the past six months R O Procedures
O (R only for
inpatients)
Major Surgical Procedures in
the past six months R R Procedures
O (R only for
inpatients)
Medical Devices and
implants R R Medical Equipment O
Vaccinations O O Immunizations O
List of resolved, closed or
inactive problems O O Problem R
Social History Observations O O Social History O
Pregnancy history (Expected
date of delivery) O O Social History (Pregnancy Observation) O
Physical findings (Vital
Signs Observations) O O Vital Signs O
Diagnostic tests (Blood
group) O O Results Section R
Treatment Recommendations R O Plan of Care O
Autonomy / Invalidity R O Functional Status O
Advance Directives O
Family History O
Payer O
Encounters O
Text only
4 sections not present in
epSOS PSepSOS: 14 sections, 1 grouped = 13 sections
CCD: 15 sections, 4 not mapped = 11 sections
Can be grouped
together, only
difference is the date
Statistics: coverage of value sets
epSOS Value Set epSOS Code
System
concepts with
corresponence/
concepts present/
(% covered)
CCD Value Set CCD Code
System
concepts with
corresponence/
concepts present/
(% covered)
epSOSActiveIngredient ATC 606/5592 (6%) Medication Drug
Class
NDF-RT 1365/10699 (13%)
epSOSActiveIngredient ATC 2836/5592 (51%) Medication Brand
Name
RxNorm 3329/13885 (24%)
epSOSActiveIngredient ATC 2836/5592 (51%) Medication Clinical
Drug
RxNorm 9642/31214 (31%)
epSOSAllergenNoDrugs SNOMED CT 79/112 (71%) Ingredient Name UNII 5315/63996 (8%)*
epSOSRoutesofAdminis
tration
EDQM
Standard
Terms
55/73 (75%) Medication Route
FDA
NCI Thesaurus 57/118 (48%)
epSOSDoseForm EDQM
Standard
Terms
28/457 (6%) Medication Product
Form
NCI Thesaurus 99/153 (65%)
epSOSIllnessesandDisor
ders
ICD-10 1775/9525 (19%)
IHTSDO maps
Problem SNOMED CT 7204/16443 (44%)
IHTSDO maps
epSOSIllnessesandDisor
ders
ICD-10 1147/9525 (12%)
NLM maps
Problem SNOMED CT 6914/16443 (42%)
NLM maps
epSOSVaccine SNOMED CT 27/31 (87%) Vaccine
Administered
CVX 87/163 (53%)
vaccinations
medications
encounters
Identification
allergies
Implantable
devices
Health
team
Security
preferences
problems
right and enabler
stakeholder groups to identify needs
key enablers and success
educational and training material
• Quality assurance
• Health goals
• Early warnings
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
International patient summary
(IPS) IG (first ballot Sep 2017)
 The International Patient Summary (IPS) is a
electronic health record extract containing
essential healthcare information intended for
use in the unscheduled, cross-border care
scenario comprising at least the required
elements of the IPS dataset.
 The IPS dataset is a minimal and non-
exhaustive patient summary dataset,
specialty-agnostic, condition-independent,
but readily usable by clinicians for the
cross-border unscheduled care of a patient.
26
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
IPS Vision, Scope, Principles
27
HL7 Int. CEN/TC 251 agreement (April, 2017)
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.”
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
International Patient Summary
Implementation Guide: Purpose
 Goal: identify the required clinical data, vocabulary and
value sets for an international patient summary.
 The international patient summary is specified using HL7
CDA R2 templates
 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.
28
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
IPS Scope
 a minimal and non-exhaustive patient summary
 specialty-agnostic,
 condition-independent,
 but readily usable by clinicians for cross-border unscheduled care of a patient.
 In this context, minimal and non-exhaustive means that an IPS is not intended to
reproduce (the entire) content of an Electronic Health Record (EHR). It covers the
so-called SAMPLE history and beyond.
 SAMPLE “Forefront Emergency Data” is a list of items, the information a
physician needs to know when he comes to an emergency situation.
 This list mentions
 S – Signs/Symptoms
 A – Allergies (emergency medical care relevant allergies like caused by medication,
radiocontrast agents),
 M – Medications (current, as recent as possible) and
 P – Past Illnesses such as chronic (still active) like coronary heart disease, renal failure or past
(not active) diseases like a former myocardial infarction. Other desired information in case of
an emergency focuses on
 L – last meal/oral intake and the
 E – events preceding the accident, emergency or other situation leading up to present contact
with the health system.29
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
IPS Approach: meet in the middle
30
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
IPS Audience
The audience for this Implementation Guide includes:
 Public
 Citizens who want to carry or access their healthcare data for emergency
or unplanned care purposes.
 Regulatory
 Policy makers such as healthcare payers or government agencies.
 Healthcare information governance authorities and regulatory bodies.
 Clinical
 Healthcare providers that offer unscheduled and emergency care.
 Healthcare providers that populate regional and national patient
summaries.
 Technical
 Vendors of EHRs unplanned care system, personal health records and
mobile health data applications.
 System integrators.
 Organizations that manage regional and national patient summaries.
31
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
Compliance / Traceability
The IPS «world»
Requirements Design Implementation
CEN prEN
Conformance
Products
ART DECOR®; Forge; ..
HL7 CDA IG
HL7 FHIR IG
EU PS
Guidelines
The Patient Summary
for Unscheduled,
Cross-border Care
IPS: Guidance for European
Implementation Technical
Specification
CEN prTS
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
Martha’s Patient
Summary - Example
33
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
IPS Structural Choices
 FHIR representation of equivalent concepts has been taken into account
 FHIR style of representation was adopted rather than conventional CDA
 patient summaries universally exchangeable and understood must rely on
structured data and multilingual international reference terminologies that are
licensed at no cost for global use in the International Patient Summary.
 it is expected that SNOMED CT and HL7 will make arrangements per their agreement to
support the use of SNOMED CT in HL7 artifacts for global use.
 International Patient Summary defines SNOMED CT as a primary terminology and it is used
for the majority of value sets.
 Other primary terminologies are
 LOINC for observations (e.g., laboratory tests) and document sections,
 UCUM for units of measure
 EDQM for dose forms and routes.
 ART-DECOR® is used as the specification platform for this Implementation Guide
 browse the specifications and review examples.
 use the tool to validate their IPS instances.
 For more information check:
 the implementation guide: http://international-patient-
summary.net/mediawiki/index.php?title=IPS_implementationguide_1
 The IPS page on Art Décor: http://art-decor.org/art-decor/decor-project--hl7ips-
34
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
Use of tooling to browse and
validate implementations
35
© 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office.
Implementation guide
Wiki
36
Reinforcing the Bridges and Scaling up
EU/US Cooperation on Patient
Summary
Trillium IIThis project has received funding from the
European Union’s Horizon 2020 research
and innovation programme under grant
agreement No 727745
Scaling-up the use of patient
summaries
Emergency
• Emergency response teams
August 24 2017, Hangzhou, China
Building a global community for digital health innovation: the
role of patient summaries
Trillium-II’s ambition touches individuals through their mobile hub and the
community through an aggregating dashboard making the most of our data-driven
economy.
https://ec.europa.eu/health//sites/health/files/ehealth/docs/guidelines_patient_summary_en.pdf
n = 14
https://survey.enalyzer.com/?pid=misikmit
mhm@medcom.dk
The Situation in Denmark
Jan Petersen, Chief Consultant
MedCom, Denmark
Building a global community for digital health
innovation: the role of patient summaries
 5,7 million citizens
 Centrally-managed health care system
 Health care is provided directly by the public sector, primarily paid
trough taxes and free of charge
5 Regions + 98 Municipalities
 54 Public hospitals (+ 19 Private)
 Approx. 2000 GP clinics
 Approx. 1200 Specialists
 407 Pharmacies
60 IT vendors – 100 IT systems
Danish Healthcare Sector - a few facts
Prerequisites for eHealth and standardization in
Denmark
• Unique Person ID - life-long and multi-purpose since 1968
• National registration of hospital contacts since1976
• Legal authorization registry for health care professionals
• Health provider/organization registry since 2006
• National security services
• National health service – tax financed
• National it-strategies
• National classifications and terminology
• - and a multi-vendor policy within eHealth
• Combination unique to Denmark
eHealth strategies
• Multi-vendor policy
• Standardised interfaces
• Messaging and central services
• Consensus building
• Regulation through (financial) agreements
The Danish Health Data Network
Exchange of data:
• Messaging
– One-to-one
– One data provider - One data
consumer
• Web service
– One-to-many
– One data provider – Many data
consumers
• Index lookup
– Many data provider – Many data
consumers
• A persistent document composed by a medical doctor
• An on-demand document compiled on-the-fly extracting
information from relevant sources
• A window – giving access to health information relevant to the
current clinical workflow/clinical task
• Sundhed.dk is such a clinical window
Patient summary – different concepts
The Human Condition
René Magritte (1933)
• The official portal for the public Danish Healthcare
Services
• Enables citizens and healthcare professionals to find
information and communicate
• Facilitates patient-centered digital services
• Provide access to and information about the Danish
healthcare services.
Sundhed.dk (sundhed ~ health)
• Providing general health related information to citizens and health care
professionals
• Granting privileged access to person related health information for citizens
and health care professionals
• A window for looking into person related health information residing in
national and local data repositories
• Sundhed.dk is displaying information not storing information
• Most information is read-only; with a few exceptions, e.g vaccinations, organ
donation
Sundhed.dk principles
54
Available Services:
• Appointments
• X-ray reports
• EHR extracts (hospital)
• Lab reports
• Your GP
• Hospital encounters
• Referrals
• GP, Dentist, Specialist contacts
• Current medication
• Vaccinations
• Power of attorney
• Organ donation
• Living will
• Scanning program participation
• Denial to share information
• Access to log data
The National Danish Health Portal
https://www.sundhed.dk/borger/service/om-sundheddk/ehealth-in-denmark/
55
• If an IPS (International Patient Summary) is a useful tool in planning and
delivering healthcare, then (yes/no questions)
– IPS available through an mobile app.
– IPS should be accessible in a national health portal
– IPS should be controlled by the patient or his relative only
– IPS should be accessible by relevant health care professionals
– IPS should only reflect the last 2 years history
Question to the audience
MedInfo, Hangzhou China
August 24, 2017
Stanley M. Huff, MD
Sharing Patient Data
56
Sharing Data in the US Between
Different EHRs
 ~40% of systems are sharing data
 ~30% of physicians can find the data
 ~20% of the time data is integrated into the physician
workflow
 ~10% of the time the data has an impact on patient
care
 Challenges of sharing summary documents
57
Data Exchange vs Services
 Data exchange
 Standard HL7 messages
 Data is copied from one EHR/system to another
 Many copies of the same data – oncology, wound care, pharmacy
 Difficult to keep multiple copies synchronized
 “Two copies of anything will eventually kill you.” – Al Pryor, PhD
 One example of data duplication (Intermountain)
 49 copies of patient registration data
 294 million patient records online
 288 million or 97% are duplicate copies
 125,000 registration updates/day or 6.1 million total data
updates daily
58
Data Exchange vs Services
 Standards based services
 Data is accessed via standard Application
Programming Interfaces (APIs)
 The data is accessed in “real time”, on demand
 The data does not get stored in the new system
 Current best example: HL7 Fast Healthcare
Interoperability Resources (FHIR – pronounced like
Fire)
59
Healthcare Services Platform Consortium
Mission
Improve health by creating a vibrant, open ecosystem of
interoperable applications, content, and services
Vision
Be a provider-led organization accelerating the delivery of
a platform that supports innovative healthcare
applications for the improvement of health and healthcare.
60
Heterogeneous Systems
Others
…
61
FHIR Profiles from
CIMI models
61
Implications for Patient Summaries
 The same program could be used to create the patient
summary from different EHRs
 A program could access multiple EHRs using the same
API to create the patient summary
 The clinician could review “always” important data
 Problem list, allergies, current medications
 Followed by focused queries related to the patient
 Last 5 HgbA1c, weights in the last year, BPs in last 3
months
62
Typical scenario today….
EHR
2
Patient
Summary
EHR
3
EHR
1
Unique 1 to 1
messaging
specifically
created for each
clinic for each
EHR installed
instance
63
Apps that enable data sharing…
 Next-gen Interoperability
 Disease and quality registries
 Population Health integration
 HIE integration
 Data capture for research
 Clinical Trial recruiting
EHR
2
Patient
Summary
EHR
3
EHR
1
Public
Health
64
Progress
 FHIR is easy to implement
 FHIR has unprecedented support from EHR vendors
 SMART on FHIR really works!
 Applications at Intermountain Healthcare
 In use - Pediatric growth chart, Pediatric drug card, BP
Centiles
 In development – HIE viewer, Pulmonary Embolus diagnosis
and management
 University of Utah collaborations
 ONC Challenge grant: Neonatal bilirubin app
 ONC High Impact grant: Surgery transition app
65
What is the Clinical Information
Interoperability Council?
 We want to create ubiquitous sharing of standardized data across the
breadth of medicine for:
 Direct patient care
 Research and learning
 Public health
 Clinical trials
 International patient summaries
 Data from devices
 Post market surveillance
 Quality and disease specific registries
 Billing and health administration
 Any where that we share health related data and information …..
HL7 CDA
CDISC
HL7 FHIR
data 138
mmHg
SystolicBPSystolicBPObs
quals
data Right
Arm
BodyLocatio
n
BodyLocation
data Sittin
g
PatientPositi
on
PatientPosition SNOMED CT
LOINC or
SNOMED Observable
Repository of
Shared Models
in an approved
Formalism
Model Review
SNOMED CT
LOINC
RxNorm
Core Reference Model
Standards Infusion
CEMs
Initial Loading of Repository
DCMs
CDEs
CDA
Templates
openEHR
Archetypes
ISO EN 13606
Archetypes
FHIM
Models
FHIR
Resources
Logical Model Development Lifecycle
CDISC
SHARE
Model Dissemination
Translators
HL7 V2
NCPDP
X12
Why?
“To help people live the healthiest
lives possible.”
Patient
69
Core Assumptions
‘The complexity of modern medicine exceeds the inherent
limitations of the unaided human mind.’
~ David M. Eddy, MD, Ph.D.
‘... man is not perfectible. There are limits to man’s
capabilities as an information processor that assure
the occurrence of random errors in his activities.’
~ Clement J. McDonald, MD
70
Eileen
Why?
 We need to
 Provide better care
 By sharing executable clinical decision support modules
 Decrease cost
 Make clinicians and patients happier
 Provide accurate computable data as the foundation of a
learning health system
The July 13th meeting in
Bethesda
 Keynote speaker – Don Rucker, MD (National Coordinator for HIT)
 About 120 attendees
 Representing – AAN, AAO, ACOG, ACS, ACC, ACP, APTA, ANA, FDA, CDC, NCI,
AHRQ, NIAID, DoD, VA, PCPI, AMIA, SPM, HIMSS and many other organizations
 Meeting outcomes
 CIIC should continue
 Create mission, vision, a plan for initial governance
 Develop a mailing list and a discussion forum
 Projects
 ACOG – OPA – FPAR, Cancer DTR, MDEpiNet RAPID, Wound Assessment, PCPI registry
interoperability project, Quality measures
 Next meeting – December 5-7 in New Orleans with HL7 Partners in Interoperability
The End
74
17/02/2018
Building a Global Community for Digital Health Innovation:
the Role of Patient Summaries
24.08.2017
Henrique Martins | President of the Board of SPMS
Thecitizeninthecentreofthesystem
International Patient Summary
Strategic Intent
Citizens have scattered data, in multiple locations
Citizens have data in multiple systems
Citizens receive care in multiple places
Citizens receive care in multiple contexts
Citizens own their data
Citizens want to control their data…
Citizens wnat to write their health data
Citizens take pills (imagine… by them selves…)
GREAT!!
Ego….
The citizen will gather, collect,
analyse and validade, identify
and question his/her health
data, will “move” part of the
data with in, to him, to
others, to the governement
for secundary use. The citizen
will move his/her data to the
care setting…
Information nomadicity ERA
Health data “dispersion”
ELETRONIC
HEALTH
RECORD
Health data “dispersion”
Aggregatedata
Aggregatedata
ELETRONIC
HEALTH
RECORD
(National? Or
Personal?)
Aggregatedata
ENESIS2020–NationalStrategyforHealthInformationEcosystem2020
Strategic Principles and Objectives:
 …principle of transparency and open data, proactive management of the value of
health data, and promotion of a new knowledge-based knowledge economy;
 …principle of centrality in the citizen;
 …principle of data portability (...) adoption of the Mobile Health / mHealth
concept;
 Promotion of interoperability (...)
 Adoption of a comprehensive governance model (...) Council of Ministers Resolution n.º 62/2016
Videocall
On Web: site
and email
On APP and
Phone
NO Paper!
ENESIS2020–NationalStrategyforHealthInformationEcosystem2020
Citizen Portal – revamped!
4thyear–NewLook,MultipleAuthentication
My Patient Summary
Citizen Portal: Patient Summary (your control, atomized)
My Patient Summary
PDF download
1st step in portability
Patient input
Professionals input
Citizen Portal: Patient Summary (your control, atomized)
The Citizen in the centre of the system
MySNSWallet
Portability – the Patient Summary and additional relevant
Health information directly in the Citizen’s possession.
Tailoring – the Citizen can choose what information is
relevant for him, download only those cards, delete them or
add new ones when he wants.
Your Patient Summary in your pocket!
MySNS Wallet: new cards with new information
• Allergies;
• Vaccines;
• Procedures;
• Diagnostics;
• Medical Devices;
• Medication;
• Rare Diseases;
• Living Will;
• Emergency card;
• Blood Donor;
• Oral Health;
• …
MySNS WaitTimes
Real time information on waiting time for emergency
rooms
Citizens’ “own” information
Information anywhere
MySNS
Appsinnumbers
MySNS Wait Times
29 597
Downloads*
MySNS Wallet
7 066
Downloads*
MySNS
65 739
Downloads* *Date 21/08/2017
PROGRESSIVE SUMS – “Improving the Health of the Portuguese,
card by card”
MySNS – Wallet: NHS Access card
MySNS – Wallet: ePrescription
Card by Card… we are making Portguese Health better!
Individual
Vaccines Card
4 298 408
Total
treated
individual
s
2 542 202
Patient
with
Vaccine
registratio
n
Number of patients existing in the
original and treated database.
It includes all users who have at least
one contact with the migrated CS
(enrolled, non-registered and
sporadic), and the same user will count
as many times as the different CSs
where they have passed.
1 985
694
Patient
with
Active
enrollme
nt
Number of migrated patients
with active enrollment in
HealthCare already migrated
Number of patients migrated
with contact with CS already
migrated and with registration
of vaccines.
44 641 Centrally registered vaccines
(since april 2016)
Citizens’ (real) Individual Vaccines Card
MySNSCommunity https://comunidade.mysns.pt/
MySNSCommunity https://comunidade.mysns.pt/
Aninvitation
Reinforcing the Bridges and Scaling up
EU/US Cooperation on Patient
Summary
Trillium II
Health Systems and Associated Competence centers:
Third parties
mhm@medcom.dk
euoffice@HL7.org
www.trilliumbridge.eu
August 24 2017, Hangzhou, China
Building a global community for digital health innovation: the
role of patient summaries
EvaluateBridge
HarmonizeGuide
euoffice@HL7.org
mhm@medcom.dk
JAP@medcom.dk
Stan.Huff@imail.org
Michael.storck@uni-muenster.de
Catherine.staes@hsc.Utah.edu
shifrin@nsi.ru
hc978@uowmail.edu.au
ellentong@ha.org.hk
haepary@naver.com
gary.leeming@manchester.ac.uk
ClemMcDonald@mail.nih.gov
ikkimgg@gmail.com
mbr@mediq.dk
Medinfo2017 Trillium II Workshop
Medinfo2017 Trillium II Workshop
Medinfo2017 Trillium II Workshop
Medinfo2017 Trillium II Workshop
Medinfo2017 Trillium II Workshop
Medinfo2017 Trillium II Workshop
Medinfo2017 Trillium II Workshop

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Medinfo2017 Trillium II Workshop

  • 1. Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary Trillium II This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 727745
  • 2. Standards Organizations: Health Systems and Associated Competence centers: Dissemination and Networking: Development and Evaluation: Third parties
  • 5. right and enabler of safe care. stakeholder groups to identify needs key enablers and success educational and training material
  • 6.
  • 7. • Quality assurance • Health goals • Early warnings Can we use patient summaries to unlock patient data?
  • 8.
  • 9. Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary Trillium II This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 727745
  • 10. 10 HL7 Foundation: who we are.. HL7 the best and most widely- used eHealth standards since 1986 HL7 v2 Clinical Document Architecture CIMI HL7 FHIR 19 National Affiliates in Europe (~38 wordwide) European HL7 foundation established in 2010 European Funded Research Projects Annual HL7 in Europe Newsletter Website: www.HL7.eu eHealth policy & Research SDO Joint Initiative Council HL7 Vision: A world in which everyone can securely access & use the right health data when & where they need it. August 24, 2017 Hangzhou, China Building a global community for digital health innovation: the role of patient summaries
  • 11. The Use Case: what if you need care abroad? • When patient needs unplanned care in another country, a EHR summary fit for the purpose of safe and efficient health care is available. • After the health care encounter, patient receives encounter report in a format and language that can be understood back home. • Addressed by European Union funded projects in cases of unplanned or emergency care - among European member states by epSOS (2008-2011) and eHDSI (2017-2020) - In the transatlantic setting by the Trillium Bridge project (www.trilliumbridge.eu) - Globally by the International patient summary implementation guide.
  • 12. European Patient Summary Guidelines, Nov 2013, rev 2016 Country of origin Country of treatment Clinical Records in the Country of treatment Contact Point for Patient Summaries In Country of Treatment Translated/ Transcoded EU Patient Summary Terminology Services Clinical Records in the country of Origin EU Patient Summary Contact Point for Patient Summaries In Country of Origin Patient seeks unplanned care where another language is spoken.
  • 13. EU Patient Summary Guideline EU patient summary guideline defines patient summary as the “minimum set of information needed to assure healthcare coordination and continuity of care” • Emergency or unplanned care refers to “the range of healthcare services available to people who need medical advice, diagnosis and/or treatment quickly and unexpectedly” • Types of EHR summaries • Emergency data set • Continuity of care record • Encounter report • Discharge summary • 2nd opinion • Clinical patient summary • Disease specific summaries • Around the world many variants of the same basic types of patient summaries • HL7 Consolidated CDA • seven document types, seven of which were consolidated in CCDA
  • 14.
  • 15. Results of Trillium Bridge 2013-2015 • 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 Patient summaries Transformer: http://informatics.mayo.edu/trillium- bridge • Identified Gaps in IHE profiles Patient Identity & Document Query/Retrieve • Validation activities: 4 EU countries/ Kaiser Permanente • EU/US Marketplace; HIMSS 2015; IHE Connectathon 2015, eHealthWeek 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.”
  • 16. Comparison of EHR summaries and the International Patient Summary bottom line Allergies Medications Problems Pregnancy History Expected date of delivery Vaccinations Social History Medical Devices Vital Signs Blood group ProceduresAllergies Problems Immunizations Procedures (surgical ) Functional Status (autonomy / invalidity) Results (blood group ) Social History Observations (lifestyle history ) Vital signs (blood pressure ) Medications Pregnancy history (expected date of delivery ) Advance Directives Encounters Family History Payers CCDPS Plan of Care (therapeutic recommendations )Medical Devices and Implants • Same base Standard (HL7 CDA) • Different philosophy: capture vs continuity of care • Different IGs: C-CDA/CCD (US realm) vs epSOS IG • Different technical approach: Open vs Closed Template
  • 17. Transforme r (CTS2) Trillium Bridge Provider-Mediated Exchange Examples of most significant issues with specification alignment • Certificates: Self signed for purposes of demonstration • SAML: Differences in the requirements for eHealth versus epSOS implementation • Patient Discovery: Demographics versus identifier based search • Document Query: Difference in Class Code for Document Type used • Document Retrieve: Country specific identifier is used to retrieve for epSOS IHE XCPD IHE XCA IHE ATNA (epSOS) IHE XCPD IHE XCA IHE ATNA (eHealth) Trillium Bridge Gateway (epSOS Open NCP) National Contact Point
  • 18. The main question for Trillium Bridge.. • Can we convert a patient summary generated in the European Union according to the EU Patient Summary Guideline to one useful in the USA? • Our Action: Compared clinically, syntactically and semantically the European PS (epSOS) and MU clinical summary (HL7 CCDA/CCD) • Evidence: use specs & examples, carry out tests • Two use cases: - Provider mediated (citizen controlled, provider initiated) - Patient mediated (citizen initiated, citizen controlled) • Blazing the transatlantic path – constraints and assumptions - Translation of narrative unstructured content (not in scope) - Incorporate patient summary elements in EHR or PHR (not in scope) - EU Citizens have access to their EU Patient Summary (e.g. epSOS) - US Citizens have access to their Clinical Summary in C-CDA/ CCD • Feasibility study: what have we learned and what are the implications?
  • 19. Comparison of EHR summaries and the International Patient Summary bottom line Allergies Medications Problems Pregnancy History Expected date of delivery Vaccinations Social History Medical Devices Vital Signs Blood group ProceduresAllergies Problems Immunizations Procedures (surgical ) Functional Status (autonomy / invalidity) Results (blood group ) Social History Observations (lifestyle history ) Vital signs (blood pressure ) Medications Pregnancy history (expected date of delivery ) Advance Directives Encounters Family History Payers CCDPS Plan of Care (therapeutic recommendations )Medical Devices and Implants • Same base Standard (HL7 CDA) • Different philosophy: capture vs continuity of care • Different IGs: C-CDA/CCD (US realm) vs epSOS IG • Different technical approach: Open vs Closed Template
  • 20. Section Comparison epSOS/EU Directive EU Patient Guidelines epSOS PS CCD Section Optionality Optionality Optionality Optionality Allergy R R Allergies R List of current medicines R R Medications R List of current problems / diagnoses R R Problem R Surgical Procedures prior to the past six months R O Procedures O (R only for inpatients) Major Surgical Procedures in the past six months R R Procedures O (R only for inpatients) Medical Devices and implants R R Medical Equipment O Vaccinations O O Immunizations O List of resolved, closed or inactive problems O O Problem R Social History Observations O O Social History O Pregnancy history (Expected date of delivery) O O Social History (Pregnancy Observation) O Physical findings (Vital Signs Observations) O O Vital Signs O Diagnostic tests (Blood group) O O Results Section R Treatment Recommendations R O Plan of Care O Autonomy / Invalidity R O Functional Status O Advance Directives O Family History O Payer O Encounters O Text only 4 sections not present in epSOS PSepSOS: 14 sections, 1 grouped = 13 sections CCD: 15 sections, 4 not mapped = 11 sections Can be grouped together, only difference is the date
  • 21. Statistics: coverage of value sets epSOS Value Set epSOS Code System concepts with corresponence/ concepts present/ (% covered) CCD Value Set CCD Code System concepts with corresponence/ concepts present/ (% covered) epSOSActiveIngredient ATC 606/5592 (6%) Medication Drug Class NDF-RT 1365/10699 (13%) epSOSActiveIngredient ATC 2836/5592 (51%) Medication Brand Name RxNorm 3329/13885 (24%) epSOSActiveIngredient ATC 2836/5592 (51%) Medication Clinical Drug RxNorm 9642/31214 (31%) epSOSAllergenNoDrugs SNOMED CT 79/112 (71%) Ingredient Name UNII 5315/63996 (8%)* epSOSRoutesofAdminis tration EDQM Standard Terms 55/73 (75%) Medication Route FDA NCI Thesaurus 57/118 (48%) epSOSDoseForm EDQM Standard Terms 28/457 (6%) Medication Product Form NCI Thesaurus 99/153 (65%) epSOSIllnessesandDisor ders ICD-10 1775/9525 (19%) IHTSDO maps Problem SNOMED CT 7204/16443 (44%) IHTSDO maps epSOSIllnessesandDisor ders ICD-10 1147/9525 (12%) NLM maps Problem SNOMED CT 6914/16443 (42%) NLM maps epSOSVaccine SNOMED CT 27/31 (87%) Vaccine Administered CVX 87/163 (53%)
  • 23.
  • 24. right and enabler stakeholder groups to identify needs key enablers and success educational and training material
  • 25. • Quality assurance • Health goals • Early warnings
  • 26. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. International patient summary (IPS) IG (first ballot Sep 2017)  The International Patient Summary (IPS) is a electronic health record extract containing essential healthcare information intended for use in the unscheduled, cross-border care scenario comprising at least the required elements of the IPS dataset.  The IPS dataset is a minimal and non- exhaustive patient summary dataset, specialty-agnostic, condition-independent, but readily usable by clinicians for the cross-border unscheduled care of a patient. 26
  • 27. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. IPS Vision, Scope, Principles 27 HL7 Int. CEN/TC 251 agreement (April, 2017) 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.”
  • 28. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. International Patient Summary Implementation Guide: Purpose  Goal: identify the required clinical data, vocabulary and value sets for an international patient summary.  The international patient summary is specified using HL7 CDA R2 templates  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. 28
  • 29. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. IPS Scope  a minimal and non-exhaustive patient summary  specialty-agnostic,  condition-independent,  but readily usable by clinicians for cross-border unscheduled care of a patient.  In this context, minimal and non-exhaustive means that an IPS is not intended to reproduce (the entire) content of an Electronic Health Record (EHR). It covers the so-called SAMPLE history and beyond.  SAMPLE “Forefront Emergency Data” is a list of items, the information a physician needs to know when he comes to an emergency situation.  This list mentions  S – Signs/Symptoms  A – Allergies (emergency medical care relevant allergies like caused by medication, radiocontrast agents),  M – Medications (current, as recent as possible) and  P – Past Illnesses such as chronic (still active) like coronary heart disease, renal failure or past (not active) diseases like a former myocardial infarction. Other desired information in case of an emergency focuses on  L – last meal/oral intake and the  E – events preceding the accident, emergency or other situation leading up to present contact with the health system.29
  • 30. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. IPS Approach: meet in the middle 30
  • 31. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. IPS Audience The audience for this Implementation Guide includes:  Public  Citizens who want to carry or access their healthcare data for emergency or unplanned care purposes.  Regulatory  Policy makers such as healthcare payers or government agencies.  Healthcare information governance authorities and regulatory bodies.  Clinical  Healthcare providers that offer unscheduled and emergency care.  Healthcare providers that populate regional and national patient summaries.  Technical  Vendors of EHRs unplanned care system, personal health records and mobile health data applications.  System integrators.  Organizations that manage regional and national patient summaries. 31
  • 32. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. Compliance / Traceability The IPS «world» Requirements Design Implementation CEN prEN Conformance Products ART DECOR®; Forge; .. HL7 CDA IG HL7 FHIR IG EU PS Guidelines The Patient Summary for Unscheduled, Cross-border Care IPS: Guidance for European Implementation Technical Specification CEN prTS
  • 33. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. Martha’s Patient Summary - Example 33
  • 34. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. IPS Structural Choices  FHIR representation of equivalent concepts has been taken into account  FHIR style of representation was adopted rather than conventional CDA  patient summaries universally exchangeable and understood must rely on structured data and multilingual international reference terminologies that are licensed at no cost for global use in the International Patient Summary.  it is expected that SNOMED CT and HL7 will make arrangements per their agreement to support the use of SNOMED CT in HL7 artifacts for global use.  International Patient Summary defines SNOMED CT as a primary terminology and it is used for the majority of value sets.  Other primary terminologies are  LOINC for observations (e.g., laboratory tests) and document sections,  UCUM for units of measure  EDQM for dose forms and routes.  ART-DECOR® is used as the specification platform for this Implementation Guide  browse the specifications and review examples.  use the tool to validate their IPS instances.  For more information check:  the implementation guide: http://international-patient- summary.net/mediawiki/index.php?title=IPS_implementationguide_1  The IPS page on Art Décor: http://art-decor.org/art-decor/decor-project--hl7ips- 34
  • 35. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. Use of tooling to browse and validate implementations 35
  • 36. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. Implementation guide Wiki 36
  • 37.
  • 38. Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary Trillium IIThis project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 727745
  • 39. Scaling-up the use of patient summaries Emergency • Emergency response teams August 24 2017, Hangzhou, China Building a global community for digital health innovation: the role of patient summaries Trillium-II’s ambition touches individuals through their mobile hub and the community through an aggregating dashboard making the most of our data-driven economy.
  • 41.
  • 42.
  • 43.
  • 44.
  • 46. The Situation in Denmark Jan Petersen, Chief Consultant MedCom, Denmark Building a global community for digital health innovation: the role of patient summaries
  • 47.  5,7 million citizens  Centrally-managed health care system  Health care is provided directly by the public sector, primarily paid trough taxes and free of charge 5 Regions + 98 Municipalities  54 Public hospitals (+ 19 Private)  Approx. 2000 GP clinics  Approx. 1200 Specialists  407 Pharmacies 60 IT vendors – 100 IT systems Danish Healthcare Sector - a few facts
  • 48. Prerequisites for eHealth and standardization in Denmark • Unique Person ID - life-long and multi-purpose since 1968 • National registration of hospital contacts since1976 • Legal authorization registry for health care professionals • Health provider/organization registry since 2006 • National security services • National health service – tax financed • National it-strategies • National classifications and terminology • - and a multi-vendor policy within eHealth • Combination unique to Denmark
  • 49. eHealth strategies • Multi-vendor policy • Standardised interfaces • Messaging and central services • Consensus building • Regulation through (financial) agreements
  • 50. The Danish Health Data Network Exchange of data: • Messaging – One-to-one – One data provider - One data consumer • Web service – One-to-many – One data provider – Many data consumers • Index lookup – Many data provider – Many data consumers
  • 51. • A persistent document composed by a medical doctor • An on-demand document compiled on-the-fly extracting information from relevant sources • A window – giving access to health information relevant to the current clinical workflow/clinical task • Sundhed.dk is such a clinical window Patient summary – different concepts The Human Condition René Magritte (1933)
  • 52. • The official portal for the public Danish Healthcare Services • Enables citizens and healthcare professionals to find information and communicate • Facilitates patient-centered digital services • Provide access to and information about the Danish healthcare services. Sundhed.dk (sundhed ~ health)
  • 53. • Providing general health related information to citizens and health care professionals • Granting privileged access to person related health information for citizens and health care professionals • A window for looking into person related health information residing in national and local data repositories • Sundhed.dk is displaying information not storing information • Most information is read-only; with a few exceptions, e.g vaccinations, organ donation Sundhed.dk principles
  • 54. 54 Available Services: • Appointments • X-ray reports • EHR extracts (hospital) • Lab reports • Your GP • Hospital encounters • Referrals • GP, Dentist, Specialist contacts • Current medication • Vaccinations • Power of attorney • Organ donation • Living will • Scanning program participation • Denial to share information • Access to log data The National Danish Health Portal https://www.sundhed.dk/borger/service/om-sundheddk/ehealth-in-denmark/
  • 55. 55 • If an IPS (International Patient Summary) is a useful tool in planning and delivering healthcare, then (yes/no questions) – IPS available through an mobile app. – IPS should be accessible in a national health portal – IPS should be controlled by the patient or his relative only – IPS should be accessible by relevant health care professionals – IPS should only reflect the last 2 years history Question to the audience
  • 56. MedInfo, Hangzhou China August 24, 2017 Stanley M. Huff, MD Sharing Patient Data 56
  • 57. Sharing Data in the US Between Different EHRs  ~40% of systems are sharing data  ~30% of physicians can find the data  ~20% of the time data is integrated into the physician workflow  ~10% of the time the data has an impact on patient care  Challenges of sharing summary documents 57
  • 58. Data Exchange vs Services  Data exchange  Standard HL7 messages  Data is copied from one EHR/system to another  Many copies of the same data – oncology, wound care, pharmacy  Difficult to keep multiple copies synchronized  “Two copies of anything will eventually kill you.” – Al Pryor, PhD  One example of data duplication (Intermountain)  49 copies of patient registration data  294 million patient records online  288 million or 97% are duplicate copies  125,000 registration updates/day or 6.1 million total data updates daily 58
  • 59. Data Exchange vs Services  Standards based services  Data is accessed via standard Application Programming Interfaces (APIs)  The data is accessed in “real time”, on demand  The data does not get stored in the new system  Current best example: HL7 Fast Healthcare Interoperability Resources (FHIR – pronounced like Fire) 59
  • 60. Healthcare Services Platform Consortium Mission Improve health by creating a vibrant, open ecosystem of interoperable applications, content, and services Vision Be a provider-led organization accelerating the delivery of a platform that supports innovative healthcare applications for the improvement of health and healthcare. 60
  • 62. Implications for Patient Summaries  The same program could be used to create the patient summary from different EHRs  A program could access multiple EHRs using the same API to create the patient summary  The clinician could review “always” important data  Problem list, allergies, current medications  Followed by focused queries related to the patient  Last 5 HgbA1c, weights in the last year, BPs in last 3 months 62
  • 63. Typical scenario today…. EHR 2 Patient Summary EHR 3 EHR 1 Unique 1 to 1 messaging specifically created for each clinic for each EHR installed instance 63
  • 64. Apps that enable data sharing…  Next-gen Interoperability  Disease and quality registries  Population Health integration  HIE integration  Data capture for research  Clinical Trial recruiting EHR 2 Patient Summary EHR 3 EHR 1 Public Health 64
  • 65. Progress  FHIR is easy to implement  FHIR has unprecedented support from EHR vendors  SMART on FHIR really works!  Applications at Intermountain Healthcare  In use - Pediatric growth chart, Pediatric drug card, BP Centiles  In development – HIE viewer, Pulmonary Embolus diagnosis and management  University of Utah collaborations  ONC Challenge grant: Neonatal bilirubin app  ONC High Impact grant: Surgery transition app 65
  • 66. What is the Clinical Information Interoperability Council?  We want to create ubiquitous sharing of standardized data across the breadth of medicine for:  Direct patient care  Research and learning  Public health  Clinical trials  International patient summaries  Data from devices  Post market surveillance  Quality and disease specific registries  Billing and health administration  Any where that we share health related data and information …..
  • 67. HL7 CDA CDISC HL7 FHIR data 138 mmHg SystolicBPSystolicBPObs quals data Right Arm BodyLocatio n BodyLocation data Sittin g PatientPositi on PatientPosition SNOMED CT LOINC or SNOMED Observable Repository of Shared Models in an approved Formalism Model Review SNOMED CT LOINC RxNorm Core Reference Model Standards Infusion CEMs Initial Loading of Repository DCMs CDEs CDA Templates openEHR Archetypes ISO EN 13606 Archetypes FHIM Models FHIR Resources Logical Model Development Lifecycle CDISC SHARE Model Dissemination Translators HL7 V2 NCPDP X12
  • 68. Why? “To help people live the healthiest lives possible.”
  • 70. Core Assumptions ‘The complexity of modern medicine exceeds the inherent limitations of the unaided human mind.’ ~ David M. Eddy, MD, Ph.D. ‘... man is not perfectible. There are limits to man’s capabilities as an information processor that assure the occurrence of random errors in his activities.’ ~ Clement J. McDonald, MD 70
  • 72. Why?  We need to  Provide better care  By sharing executable clinical decision support modules  Decrease cost  Make clinicians and patients happier  Provide accurate computable data as the foundation of a learning health system
  • 73. The July 13th meeting in Bethesda  Keynote speaker – Don Rucker, MD (National Coordinator for HIT)  About 120 attendees  Representing – AAN, AAO, ACOG, ACS, ACC, ACP, APTA, ANA, FDA, CDC, NCI, AHRQ, NIAID, DoD, VA, PCPI, AMIA, SPM, HIMSS and many other organizations  Meeting outcomes  CIIC should continue  Create mission, vision, a plan for initial governance  Develop a mailing list and a discussion forum  Projects  ACOG – OPA – FPAR, Cancer DTR, MDEpiNet RAPID, Wound Assessment, PCPI registry interoperability project, Quality measures  Next meeting – December 5-7 in New Orleans with HL7 Partners in Interoperability
  • 75. 17/02/2018 Building a Global Community for Digital Health Innovation: the Role of Patient Summaries 24.08.2017 Henrique Martins | President of the Board of SPMS
  • 77. International Patient Summary Strategic Intent Citizens have scattered data, in multiple locations Citizens have data in multiple systems Citizens receive care in multiple places Citizens receive care in multiple contexts Citizens own their data Citizens want to control their data… Citizens wnat to write their health data Citizens take pills (imagine… by them selves…) GREAT!! Ego…. The citizen will gather, collect, analyse and validade, identify and question his/her health data, will “move” part of the data with in, to him, to others, to the governement for secundary use. The citizen will move his/her data to the care setting… Information nomadicity ERA
  • 83. ENESIS2020–NationalStrategyforHealthInformationEcosystem2020 Strategic Principles and Objectives:  …principle of transparency and open data, proactive management of the value of health data, and promotion of a new knowledge-based knowledge economy;  …principle of centrality in the citizen;  …principle of data portability (...) adoption of the Mobile Health / mHealth concept;  Promotion of interoperability (...)  Adoption of a comprehensive governance model (...) Council of Ministers Resolution n.º 62/2016
  • 84. Videocall On Web: site and email On APP and Phone NO Paper! ENESIS2020–NationalStrategyforHealthInformationEcosystem2020
  • 85. Citizen Portal – revamped!
  • 87. My Patient Summary Citizen Portal: Patient Summary (your control, atomized)
  • 88. My Patient Summary PDF download 1st step in portability Patient input Professionals input Citizen Portal: Patient Summary (your control, atomized)
  • 89. The Citizen in the centre of the system
  • 90. MySNSWallet Portability – the Patient Summary and additional relevant Health information directly in the Citizen’s possession. Tailoring – the Citizen can choose what information is relevant for him, download only those cards, delete them or add new ones when he wants. Your Patient Summary in your pocket!
  • 91. MySNS Wallet: new cards with new information • Allergies; • Vaccines; • Procedures; • Diagnostics; • Medical Devices; • Medication; • Rare Diseases; • Living Will; • Emergency card; • Blood Donor; • Oral Health; • …
  • 92. MySNS WaitTimes Real time information on waiting time for emergency rooms Citizens’ “own” information Information anywhere
  • 93. MySNS
  • 94. Appsinnumbers MySNS Wait Times 29 597 Downloads* MySNS Wallet 7 066 Downloads* MySNS 65 739 Downloads* *Date 21/08/2017
  • 95. PROGRESSIVE SUMS – “Improving the Health of the Portuguese, card by card”
  • 96. MySNS – Wallet: NHS Access card
  • 97. MySNS – Wallet: ePrescription
  • 98. Card by Card… we are making Portguese Health better! Individual Vaccines Card 4 298 408 Total treated individual s 2 542 202 Patient with Vaccine registratio n Number of patients existing in the original and treated database. It includes all users who have at least one contact with the migrated CS (enrolled, non-registered and sporadic), and the same user will count as many times as the different CSs where they have passed. 1 985 694 Patient with Active enrollme nt Number of migrated patients with active enrollment in HealthCare already migrated Number of patients migrated with contact with CS already migrated and with registration of vaccines. 44 641 Centrally registered vaccines (since april 2016)
  • 103. Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary Trillium II
  • 104.
  • 105. Health Systems and Associated Competence centers: Third parties
  • 106.
  • 107.
  • 108. mhm@medcom.dk euoffice@HL7.org www.trilliumbridge.eu August 24 2017, Hangzhou, China Building a global community for digital health innovation: the role of patient summaries EvaluateBridge HarmonizeGuide

Editor's Notes

  1. Good morning ladies and gentlemen. We have a problem with health data. My premise is that patient summaries can serve as the entry point to health information. My talk today will be on Trillium II – an initiative that aims to create a community of innovation for the practice of digital health starting from the notion of patient summaries. And my premise here for you to think about is that patient summaries can serve as the entry point to navigate through a person’s health data offering essential data and links to find additional information.
  2. Good morning ladies and gentlemen. We have a problem with health data. My premise is that patient summaries can serve as the entry point to health information. My talk today will be on Trillium II – an initiative that aims to create a community of innovation for the practice of digital health starting from the notion of patient summaries. And my premise here for you to think about is that patient summaries can serve as the entry point to navigate through a person’s health data offering essential data and links to find additional information.
  3. I am the secretary general of the HL7 foundation. The vision of HL7 is a world in which everyone can securely access and use the right health data when and where needed. HL7 was formed in the US in 1986 to connect lab systems for EHRs. Since then it has been leading innovation in standards: first with CDA, and then spawing out Fresh Look task force, CIMI and FHIR bringing together the power of APIs and the extensive domain knowledge developed in HL7 over the years. The European office was formed in 2010 and since then has participated in a number of leading initiatives. It is the third year that we bring this event to you; bridging a strong a academic perspective to a rather practical on interoperability and standards.
  4. The patient feels sick and seeks healthcare in a country that is not his/her country of origin. The most frequent situation is that the health professional has no prior clinical information about that patient and it is not expected that his visit will be repeated. They will not normally have a language in common.
  5. Trillium Bridge concluded a gap analysis comparing the implementation guides for epSOS and CCD-CCD and managed to identify the shared clinical elements: problems, medications, allergies. It also triggered the creation of interoperability assets: terminology prototype, transformer, and also an account of differences in the IHE profiles in EU and US on patient identity and document query retrieve. Several validation activities where carried out in EU/US Marketplace, HIMSS, IHE Europe, eHealth Week. Finally it led to a key transversal recommendation, and 20 thematic ones. The key recommendation is advance an international patient summary standard to enable people to access and share their health information for emergency or unplanned care anywhere and as needed. At a minimum the IPS should include innumication, allergies, medications, clinical problems, past operations and implants.
  6. Speaker Notes:
  7. Sections not included in epSOS PS (or with limited Value Sets): Test lab results Non surgical procedure and results Sections optional in CCD: Implanted devices Surgical procedures Pregnancy (wider than in epSOS)
  8. The IPS Principles The standards specification for the IPS will be implementable Promote (the evolution and convergence of) existing standards Rely on solutions that are already implemented or ready for implementation Consider new or additional solutions as they become available The standards specification for the IPS will be applicable for global use Strive for global accessibility of standards for use at no cost Strive for a core set of globally accessible and usable terminologies and value sets Include free text in addition to the structured codes as needed Do not include local solutions in the core specification that are not available in other jurisdictions The standards specification will be extensible and open to future use cases and solutions The IPS provides common content that can be extended and specialized for other use cases, or localized for specific jurisdictional needs The IPS is open to emerging solutions for unresolved issues or improvements The standards specifications and their implementation must be sustainable through: A robust maintenance and update process for the IPS A process to ensure clinical validity of the IPS, meeting: clinical requirements (including workflow) clinical documentation requirements information quality requirements Moreover HL7 International and CEN/TC 251 will manage the expectations of the IPS standards specifications among stakeholders, by stipulating the role of the IPS as a foundation for others to extend justifying the inclusion of items in the IPS within the limited context of cross-border or cross-jurisdiction unscheduled care.
  9. Note that the last two items are not considered part of a Patient Summary. Specialty-agnostic means that an IPS is not filtered for a specialty. As an example, allergies are not filtered to the specialty of internal medicine, thus may also include food allergies, if considered to be relevant for, e.g. unplanned care. Condition-independent means that an IPS is focused on the actual situation (e.g. unscheduled care) and is not intended to represent the entire patient's medical history. Furthermore the scope of the IPS is global. Although this is a major challenge, this implementation guide takes various experiences and newer developments into account to address global feasibility to the extent possible.
  10. The more relevant consequences of these principles in the template design are: The adoption of a meet in the middle approach in the templates’ design to balance the need of maximizing the reuse of existing implemented templates (epSOS, C-CDA CCD; IHE PCC…) and facilitate implementation with the need of optimizing the fitness for purpose within the IPS scope. This approach aims to avoid a pure technical exercise of templates harmonization or an academic exercise that does not take in account what is already implemented. The IPS meet-in-the-middle approach Cooperate with the HL7 Terminology Authority and the organizations that own the used code systems (e.g. SNOMED International) to make available the IPS value sets for global use at no cost for implementation of the IPS. When global identifiers are not (or not yet) available, as in the case of the medicinal products, enhance the model proposed for that element with relevant identifying and descriptive attributes that could help the global identification of that element. Select a set of reference global terminologies, provisioning for the inclusion of the locally used terminologies. Avoid solutions (e.g. identifiers, terminologies, standards), even promising in the resolution of some of the well-known issues (as the medicinal product identification), that are not yet available for concrete global use. The IPS has been however, already designed, where possible, to be ready to adopt these solutions when they are made available for real use (e.g. the IDMP identifiers) and to already support parts of those solutions that can be used today. Within the scope of the IPS and of the “implementable” principle, attempt to be enough generic in the design of the templates so that the IPS templates are extensible to support new scenarios, specific specialties, or conditions through templates specialization or adaptation mechanisms.
  11. Let’s focus on the content.. CEN prEN: The Patient Summary for Unscheduled, Cross-border Care The IPS project works for assuring the compliance and the traceability i order implementable specification actually fullfill the business requirement From deployment perpsctive the IPS project is aware about the importance of the conformance (assessment) and any kind of conformance support to implementers
  12. Martha’s patient summary: a traveling corporate executive Martha, a 45-year old corporate executive and breast cancer survivor travels frequently on business between the US and EU countries. She carries a clinical summary including a plan of care on her mobile phone and on paper just in case she needs to seek medical care regarding recurring symptoms.
  13. HEALTH CONDITIONS(e.g. includes current health problems that the person is being treated for, as well as chronic conditions and disabilities)
  14. HEALTH CONDITIONS(e.g. includes current health problems that the person is being treated for, as well as chronic conditions and disabilities)
  15. The point is that barriers to current data sharing will also exist for sharing and use of patient summaries.
  16. First meeting held Aug 5, 2013 Incorporated as a not-for-profit corporation on Aug 22, 2014 3 Benefactor members Veterans Administration Louisiana State University Health Intermountain Healthcare Key alliances Center for Medical Interoperability (C4MI) OSEHRA 3 Associate (organizational) members Regenstrief Motive Allscripts 11 Individual members Society Members: AMA, MHII and ACOG
  17. Create an open shared repository of “logical models” in an agreed format Import existing content whenever possible Select one approved logical model for a given kind of data in a given context (data entry, data retrieval and analysis) Create “approved” mappings to standard implementations Caveats This is the first meeting of a “campaign” or a “crusade” This is a huge project – it will take many years This is an essential first step to semantic interoperability. We also need Security Legal basis for sharing data Aligned incentives for sharing data
  18. HL7 meeting in San Antonio January 2012 30 something, newly married, planning for a family Expert informaticist Ran a half marathon 2 weeks before the HL7 meeting Fever, nausea and vomiting, collapsed, taken to a community hospital Unrecognized sepsis, died of untreated septic shock The clinicians involved were not “bad” people. They were just busy and did not apply all the knowledge that they had. If you are a practicing clinician, you are very lucky if you haven’t been involved in a similar bad outcome. I was, as a first year Internal Medicine resident. (Acute abdomen in a really tough cowboy. I frail old woman vomiting blood.)
  19. $1.2 billion to install an EHR system We do the right thing about 50% of the time 250,000 deaths per year due to medical errors - NPR http://www.npr.org/sections/health-shots/2016/05/03/476636183/death-certificates-undercount-toll-of-medical-errors 440,000 deaths per year due to medical errors – Northwestern https://news.northwestern.edu/stories/2016/11/how-to-prevent-440000-yearly-deaths-due-to-medical-errors/ ~35,000 deaths per year from automobile accidents, estimated 40,000 in 2016 When did it become socially acceptable to have a quarter of a million people die each year from medical errors? It is like trying to do thermodynamics before there were reliable thermometers Each EHR vendor uses a proprietary database schema, proprietary models and unique terminology to represent clinical data Some standardization of codes is now occurring, but Data is not consistent vendor to vendor, or even organization to organization within the same vendor This means that: Sharing data is difficult Sharing executable software across vendors is impossible Each useful application is created or re-created on each different platform (and we pay for it!) There are unmet needs for health care applications and decision support Software costs are higher than they need to be