Regenstrief Work In Progress Session

Taming the wicked problem of

health data interoperability
#BigData #PrecisionHealth #PopulationHealth

Daniel J. Vreeman, PT, DPT, MS

Regenstrief-McDonald Scholar in Data Standards
Indiana University School of Medicine

Director, LOINC and Health Data Standards

@djvreeman Regenstrief Center for Biomedical Informatics

2017
Wicked problems
No definite formulation
No stopping rules
Good/bad, not true/false solutions
No immediate or ultimate test

Rittle HWJ and Webber M. Dilemmas in a general theory of planning. Policy Sciences. 1973;4:155-169.
Interoperability
The ability of health IT to communicate, exchange data,
and use the information that has been exchanged.

Foundational Structural Semantic

HIMSS Definition. Available at: http://www.himss.org/library/interoperability-standards/what-is-interoperability

Disclosure
Im the author of the book LOINC Essentials published
by Blue Sky Premise, LLC where I serve as President.

Not a NYT Best Seller. Net profit going to a special

charitable project: danielvreeman.com/build-a-school

PI on a contract from bioMrieux for LOINC content

 Why
interoperability
matters
photo via proimos
 Interoperability and the free flow of data
are absolutely crucial, absolutely crucial,
to making the benefits as big as possible
for our system and making sure we're
helping as many patients as we can.

Tom Price, MD
HHS Secretary
Speaking at Health Datapalooza April 27, 2017

photo via Mark Taylor | cc-by

Precision Medicine
accounting for individual differences in
peoples genes, environments, and lifestyles

photo via jamescridland | cc-by

Objective 1.
Enable interoperability among
institutions and individuals that
support care delivery across the
cancer continuum, from prevention
through treatment, survivorship,
and end-of-life care.

Presidents Cancer Panel. Improving Cancer-related Outcomes with Connected Health. November 2016. Available online.
Patients move faster
and further than their
health information
 Taming this
wicked problem

photo via tgerus | cc-by-sa

Strategies for
Wicked Problems
Authoritative
Competitive
Collaborative

Building a community of interest

Roberts N. Wicked problems and network approaches to resolution. International Public Management Review. 2000;1(1):1-19.
LOINCs superhero
origin story

McDonald et al. Canopy Computing: using the Web in Clinical Practice. JAMA. 1998;280(15):1325-1329.
Local systems have
different ways of
identifying the
same concept.

Only way to
overcome is with
standards.
 Logical Observation Identifiers Names and Codes

The universal standard for

identifying health measurements,
observations, and documents.
Est. 1994
A small team that does BIG things
 Our View
Collaboration beats competition

Incremental iterations

Community-driven development
photo via Sadie Hernandez
LOINC is free,
but invaluable
LOINC makes health
data more portable
and understandable
to different
computer systems.
Our vision is for
LOINC to be
integrated into every
clinical information
system that shares or
aggregates data.
 A rich trove of 83,000+ standardized variables
Genetics Lifestyle

Lab and clinical Environmental

 A rich trove of 83,000+ standardized variables
Genetics Lifestyle

21654-9 CFTR gene targeted mutation analysis

24475-6 F2 gene c.20210G>A [Presence] 41950-7 Number of steps in 24 hour Measured

75547-0 Noninvasive prenatal fetal aneuploidy 75296-4 Carbohydrate intake 24 hour Estimated
and microdeletion panel based on Plasma cell- 82289-0 Rating of perceived exertion [Score]
free+WBC DNA by Dosage of chromosome-specific
circulating cell free (ccf) DNA 72166-2 Tobacco smoking status NHIS

82245-2 Chromosome region 22q11.2 deletion in 64098-7 Distance walked in 6 minutes

Amniotic fluid or CVS by FISH

Lab and clinical Environmental

82464-9 Mosquito count [#] in Environmental
specimen
4548-4 Hgb A1c MFr Bld
67784-9 Individuals below poverty line Neighborhood
8462-4 Diastolic blood pressure 63736-3 Materials to which you were exposed in your
24725-4 Head CT work or daily life
63805-6 How long did you handle paints or solvents
57021-8 CBC W Auto Differential panel - Blood
yourself?
8633-0 QRS duration 67640-3 My teachers believe that I can do well in
my school work
A big toolbox for
Implementers
RELMA desktop mapping program
Online search app (search.loinc.org)
Community resources
Reference material
Other LOINC-related software
LForms, FHIR Vocabulary server, etc

photo via Robert S Donovan | cc-by-nc

 LOINC Codes Over Time by Release
90,000
LOINC Codes

80,000 Only Lab LOINC Codes

70,000

60,000

50,000

40,000

30,000

20,000
laboratory terms only
10,000

0
 Last Year:
New term requests from 50+ organizations in 14 countries
Grown in Indiana
Serving a global community
Translations
into 18 variants
of 12 languages
46,430 registered users from 165 countries

6,000 new users per year

Official national standard in 30+ countries
A small taste of LOINC
adoption around the world
Open-source LIMS in
Vietnam
Implemented at 38 hospital, public health,
and HIV testing laboratories in Vietnam.

Mapped to LOINC to facilitate data

exchange and interoperability projects

a feasible approach towards establishing a sustainable

laboratory informatics program that met the needs of health
laboratories in Vietnam.
Landgraf KM, Kakkar R, Meigs M, et al. Open-source LIMS in Vietnam: The path toward sustainability and host country ownership. Int J Med Inform. 2016 Sep;
93:92-102. Epub 2016 Jun 23. PubMed PMID: 27435952.
Austrian National Patient
Health Record (ELGA)
LOINC for laboratory tests as well as for
document and section encoding.
A value set of LOINC codes and preliminary
ELGA-wide codes was developed for
laboratory analyses and is constantly
maintained and updated in coordination with
the laboratory community.

Seerainer C, Sabutsch SW. eHealth Terminology Management in Austria. Stud Health Technol Inform. 2016;228:426-30. PubMed PMID: 27577418.
Nictiz

Many national projects in the

Netherlands are using LOINC
Nationwide surveillance network for bacterial
typing and antibiotic resistance surveillance
National laboratory code list (selected by NVKC
and NVMM societies)
National special test registry (WieDoetWat-
database)

Nictiz is a LOINC Premium Member

http://www.cchi.gov.sa/en/Projects/SHIP/Pages/Dictionary.aspx
International Patient
Summary (IPS)
A non-exhaustive patient summary, specialty-
agnostic, condition-independent, but readily
usable by clinicians for the cross-border
unscheduled care of a patient.

Coordinated with the IPS project mandated to

CEN TC 251 by the European Commission.

Uses LOINC for:

Document type, sections, lab results, other clinical
observations, and radiology reports

http://international-patient-summary.net
Turkish Ministry of
Health

General Directorate of Health

Services recently mandated LOINC
for laboratory results in public,
university, and private health facilities

Maintain a Turkish translation of LOINC and

mapping to national billing codes (plus online
search/mapping tool).

http://www.cchi.gov.sa/en/Projects/SHIP/Pages/Dictionary.aspx
And so many more
Australia, Brazil, Canada, Estonia, France,
Italy, Malaysia, New Zealand, Qatar, Russia,
Saudi Arabia, South Africa, Thailand, South
Korea, etc
A few highlights from the USA
87 mentions of LOINC
 Lots o LOINC
Representing Patient Allergic Reactions
Representing Patient Family Health History
Representing Patient Functional Status and/
or Disability
Representing Imaging Diagnostics,
Interventions and Procedures
Representing Laboratory Tests
Nursing
Representing Nursing Assessments
Representing Nursing Interventions
Representing Outcomes for Nursing
Representing Patient Clinical
Problems (i.e., Conditions)
Sex at Birth, Sexual Orientation and
Gender Identity
Representing Patient Gender Identity
Representing Patient Sex (At Birth)
Representing Patient-Identified Sexual
Orientation
Social Determinants
Representing Financial Resource
Strain
Representing Level of Education
Representing Stress
Representing Depression
Representing Physical Activity
Representing Alcohol Use
Representing Social Connection and
Isolation
Representing Exposure to Violence
(Intimate Partner Violence)
Representing Patient Tobacco Use (Smoking
Status)
Representing Patient Vital Signs
LOINC codes will be required for
laboratory test data in studies
starting after March 2018

Actively facilitating discussion

with IVD vendors about
identifying the LOINC codes
associated with their products
Centers for Medicare &
Medicaid Services

Long term goal of unification across

settings. Representing all data
elements from assessment
instruments in LOINC.

Focused on MDS, OASIS, IRF-PAI,

LCDS instruments now.

2,000+ individual data elements!

Contract HHSM-500-2016-00040C
Centers for Disease Control
and Prevention

Longtime users of LOINC:

Electronic Laboratory Reporting

Case Reporting
Reportable Condition Mapping Table
Immunization Messaging
National Emergency Medical Services Info System
National Trauma Data Standards
National Healthcare Safety Network - Healthcare
Associated Infection (HAI)

https://phinvads.cdc.gov/
Do you have an iPhone?

photo via Prime Number | by-nc-sa

Apple Health Export in C-CDA Format
 LOINC codes! Oh snap!

Apple Health Export in C-CDA Format

Banding together
for global good
photo via scarlatti2004_images | cc-by-sa
MOU to represent IEEE
11073 standards that
support interoperable
communications among
both traditional medical
devices and personal
health devices.

We now publish the LOINC/IEEE Medical Device Code Mapping Table

Landmark 10 year
agreement for
cooperative
development
We now publish a set of LOINC/SNOMED CT Collaboration Files
Long-term
agreement to create
a unified model for
naming radiology
procedures

We now publish the LOINC/RSNA Radiology Playbook File

 There will come a time when you believe
everything is finished.

That will be the beginning.

Louis LAmour
novelist
from Lonely on the Mountain

photo via Wikipedia | cc-by-sa

What were seeing ahead
Never arrived. Always becoming.
Fine tuning our development cycle
Keeping up with content development needs
Redundancy / capacity building
Expanding in other roles:
coordinating workgroups, implementation support,
education/certification
 Emerging Domains
New data models for genetics [HL7]
Structured path reporting for cancer [CAP, ICCR]
Patient reported outcomes [PCORI]
Social determinants of health [many]

photo via glasgowamateur | cc-by-sa

 If youve got data
elements to exchange with
othersthink of LOINC!
Tools for
implementers
Equivalence Classes
A flexible, extensible, and computable
mechanism for rolling up LOINC codes
into clinically relevant equivalence
groups that enable more efficient
processing and aggregation of
laboratory and other data from diverse
health IT systems

First alpha release coming in June

Grant 3 UL1 TR001108-04S1
 Certification
Expedited Shipping
Custom Implementation Support

bioMrieux
NIDDK
Enhancing APSE/CTSI

Sustainability NCCIH
NIBIB
CMS

Regenstrief-McDonald Chair
LOINC Premium Membership
LOINC Community Donations
National Library of Medicine
 Certification
Expedited Shipping
Custom Implementation Support

bioMrieux
NIDDK
Enhancing APSE/CTSI

Sustainability NCCIH
NIBIB
CMS

Regenstrief-McDonald Chair
LOINC Premium Membership
LOINC Community Donations
2/3 of current funding National Library of Medicine