2014 11 - #amia2014 panel - local terminologies and standards - the regenstrief experience
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Daniel J. Vreeman, PT, DPT, MScAssociate Research Professor
, Indiana University School of Medicine
Associate Director for Terminology Services, Regenstrief Institute, Inc
2014
Squaring the circleManaging local healthcare terminologies in the age of standardizationThe Regenstrief Experience
#AMIA2014#S02
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Overview
1. We love standards2. We love our local terminology
3. Six lessons weve learned
photo via Vernio77
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Informatics Pioneers
40 years of EMR work
Indiana Network for Patient Care
Regenstrief is the Data Switzerland
Most comprehensive and longest tenured Health InformationExchange (HIE) in USA
Crash Test Dummies
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A Humongous Database
200+ source systems16+ million patients
5.6 billion results164 million text reports
more than 1 million transactions/day
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photo via pagedooley
Standards let us (re)use the
data for everything
Clinical care, public health reporting, quality
management, clinical and epidemiological research, etc
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Data Standards UsGetting the data when and where it is needed
R
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Long History
ASTM 1238-88
HL7 (O&O, V3, etc)
LOINCUCUM
Collaborator with other SDOsHL7, IHTSDO, RSNA, SCO
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Logical
Observation
IdentifiersNames and
CodesA universal code system that facilitates exchange,
pooling, and processing of clinical data.
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1
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LOINC Codes
Only Lab LOINC Codes
LOINC Codes Over Time by Release
laboratory terms only
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35,000+ registered users in 163 countries
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You might be thinkingLike LOINC, SNOMED CT, RxNORM, etcare all pretty mature now
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Only crazy people wouldmanage their own terminology!
photo via Tatiana Gerus
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LOINC has Pretty Good Coverage
Lin MC, Vreeman DJ, McDonald CJ, Huff SM. A characterization of local LOINC mapping for laboratory tests in three large institutions. Methods Inf Med. 2011;50(2):105-14. doi:
10.3414/ME09-01-0072. Epub 2010 Aug 20. PubMed PMID: 20725694
Concept Type 63%-88%
Concept Token 72%-90%
For a big institution, if you exclude local codes not useful
for data exchange, concept token coverage can reach 99%
Theres a fair bit of highly localized contentin most systems.
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The Regenstrief Dictionary
photo via muffet
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Indiana Network for Patient Care
St. Vincent
St. Francis
IU Health
Wishard Health
Community
IUMG
Public Health
Global Patient
Index Concept
Dictionary
Referral Labs, RxHub, etc
Global Provider
Index
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Regenstrief Dictionary
Core interface terminology
Progenitor of LOINC
More than 43,000 terms
Questions, answers, and units
HIE services and CPOE at one institution
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Term Attributes
ID 13793
Universal Name CD3+CD4+ Cells
DescriptionNumber of CD4 T-cells (T4 helper cells) per volume. Both CD3+
and CD4+ are required to identify T4 helper cells.
Units #/mm3
Type (data type) 2
Code (class) t
Source IU Spec Hem
Synonyms Total T(T4); Abs T4; IU257; CD4 Abs (Helper T); Abs T (T4/CD4)
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Lessons LearnedAlong the Way
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Lesson 1.Life is messy.
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HL7 messages can be
syntactically correct but
semantically bastardized.
Everything is an OBX.
Everything in the NTE.
68 different terms forPathologist Name
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Units of measure are unruly.
Sometimes missing (or in NTE).
Variation runs wild.>20% of Qn LOINCs had different units
Lin MC, Vreeman DJ, Huff SM. Investigating the Semantic Interoperability of Laboratory Data Exchanged Using LOINC Codes in Three Large Institutions. AMIA Annu Symp Proc. 2011;805-814.
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Were Not AloneUnits for platelet counts in Mini-Sentinel
Blank FL TH/UL X10(3)
% K/CMM THOU/CMM 1000/UL
/100 W k/cmm thou/cmm X10(3)/MCL
/CMM K/CU MM thou/mm3 X10(3)/UL
CMM K/CUMM THOU/UL X10(6)/MCL
10 3 L K/MCL THOUS/CU.MM X10*9/L
10X3UL K/mcL THOUS/MCL X10E3/UL
10^3/UL K/UL THOU/mcL X1000
10*3/uL k/uL THOUS/UL X10X3
10?3/uL KU/L Thou/uL X10^3/UL
10E3/uL K/MM3 THOUSA x10
10e3/uL K/mm3 THOUSAND X10?3/ul
10e9/L LB THOUSAND/UL X10E3/UL
E9/L PLATELET CO U X10E3
BIL/L T/CMM X 10-3/UL K/A?L
bil/L TH/MM3 X 10(3)/UL K/B5L
CU MM th/mm3 X10 3
Raebel MA, Haynes K, Woodworth TS, et al. Electronic clinical laboratory test results data tables: lessons from Mini-Sentinel. Pharmacoepidemiol Drug Saf. 2014 Jun;23(6):609-18.
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Lesson 2.Terminology management is hard.
A short history of modernist painting (part 2) by Mark Tansey
photo via brainblogger
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It might not be brain
surgery, but it requires bothexpertiseand effortthat is
easy to underestimate.
Baorto DM, Cimino JJ, Parvin CA, Kahn MG. Combining laboratory data sets from multiple institutions using the logical observation identifier names and codes (LOINC). Int J Med Inform.1998 Jul;51(1):29-37.
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Ajourney, not adestination.
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Vreeman DJ, Stark M, Tomashefski GL, Phillips DR, Dexter PR. Embracing change in a health information exchange. AMIA Annu Symp Proc. 2008 Nov 6:768-72.
Across many INPCinstitutions, in 2 years after
go live we saw half as manynew local terms appearas
what we started with.
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Meanwhile, weve always
struggled to find adequatefunding for this work.
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Lesson 3.Clear descriptions are king.
photo via JD Hancock
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Humans need to choose terms accurately
Clear, concise text descriptions for each
term are essential.
Descriptions are King
We didnt always understand this.
photo via _fxr
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Distinguishes this concept from others
Describes what the heck it is
Good Descriptions
What does it measure?What is it used for?What is the clinical relevance?How is the test performed?
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Lesson 4.Sometimes we bend the rules.
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We love the desiderata, but
Sometimes we cant get the softwaredevelopment done right, so we make
compromises with the terminology.
Examples:
flowsheet display of tests in multiple panelswriting transforms for everythings an OBX HL7
violate concept orientation
inelegant context representation
Terms are cheap!- Paul Dexter
Cimino JJ. Desiderata for controlled medical vocabularies in the 21st century. Meth Inform Med 1998;37:394403.
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Lesson 5.Work smarter, not harder.
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Not every term has equal value
Pareto Principle
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
0 500 1000 1500 2000 2500 3000 3500 4000
CumulativeLaboratoryObservationVolume(%)
Number of Laboratory Observation Codes N)
Vreeman DJ, Finnell JT, Overhage JM. A rationale f or parsimonious laboratory term mapping by frequency.
AMIA Annu Symp Proc. 2007 Oct 11:771-5. PubMed PMID: 18693941.
In INPC, 80 codesmade 80% of volume
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photo via Fishking_1
Upstream standardization.Ask instrument or test kit
manufacturers.
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Lesson 6.Standards that get used get better.
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Sharing is Caring
Standards will get better if users helpimprove them through new term requests.
Most local vocabulary work is done in
isolation at each institution and not shared.
Even among users of the same vendor.
We built this concept into LOINC license & culture from the beginning.
Novel uses of crowd-sourcing? Need a connection back to standards.On the mapping front, see https://loinc.org/community/mappings
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Pros and ConsWeighing the benefits and costs ofmaintaining a local master dictionary
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Pros
1. Ultimate control2. Single code system for
applications across all
content domains
Hugely valuable
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Cons1. Expensive2. Cant easily use tools from
others3. Others cant use our innovation
applications as easily
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Were trying to find
harmony using local termsand standards together
photo via scarlatti2004_images
We love local terms! We love standards!
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danielvreeman.com/speaking
http://danielvreeman.com/speaking