#AMIA2014#S02

Squaring the circle

Managing local healthcare terminologies in the age of standardization

The Regenstrief Experience

Daniel J. Vreeman, PT, DPT, MSc
Associate Research Professor, Indiana University School of Medicine
Associate Director for Terminology Services, Regenstrief Institute, Inc

2014

Overview
1. We love standards
2. We love our local terminology
3. Six lessons weve learned

photo via Vernio77

Crash Test Dummies

Informatics Pioneers
40 years of EMR work
Indiana Network for Patient Care

Most comprehensive and longest tenured Health Information

Exchange (HIE) in USA

Regenstrief is the Data Switzerland

A Humongous Database
200+ source systems
16+ million patients
5.6 billion results
164 million text reports
more than 1 million transactions/day

Standards let us (re)use the

data for everything
Clinical care, public health reporting, quality
management, clinical and epidemiological research, etc
photo via pagedooley

Data Standards R Us
Getting the data when and where it is needed

Long History
ASTM 1238-88
HL7 (O&O, V3, etc)
LOINC
UCUM
Collaborator with other SDOs
HL7, IHTSDO, RSNA, SCO

Logical
Observation
Identifiers
Names and
Codes
A universal code system that facilitates exchange,
pooling, and processing of clinical data.

4
5/ /24
6/ 24/ /19
2 1 9
6/ 3/ 99 5 |
1
7/ 28/ 99 5 | 11.0

1 1 5
9/ 4/ 99 | 1 .0a
12 15 19 5 | .0
/2 /1 95 1. b
8/ 4/2 1/1995 | 1 0c
.
1229/ 8/1 995 | 1 0d
/3 19 99 | .0e
/ 9 6 1
1/ 1996 | | 1 .0f
10 8 6 1. .0
/9 /19 | 1 0h g
(
5//19 997.0h 2)
2/ 1/197 | 1(3)
7/ 12 99 | 1 .0
. i
2
8/ 3/ /19 8 | 0j-a
6/ 19 99 1.0
2/ 19999 | 1 k
6/ 4/ 9 | 1 .0l
13 20 | 1 .0
1/ /2 00 .0mm
1/ 1/ 00 | 1 a
3 20 0 .0
7/1/2 01 | 1. n
0
0
1/1/2 01 | 2. 0
0
1 0
2/ /2 01 | 2. 0
2/ 1/ 00 | 2 01
19 20 2 .0
8/ /2 02 | 2. 3
0
0
9/1/2 02 | 2. 4
0
0
5/1/2 02 | 2. 5
10 1/ 00 | 2 06
/ 20 2 .0
1/1/2 03 | 2. 7
0
0
2/1/2 03 | 2. 8
12 1/ 00 | 2 09
2

12/1/ 004 | 2.10
/1 20 4 | .1
6/ /2 04 2. 1
12 1/ 00 | 2 12
/1 20 4 | .1
6 / 0 2 3
12 /1/200 5 | .14
/2 20 5 2.1
6/ 1/ 06 | 2 5
12 21 20 | .16
/0 /2 06 2.1
7/ 3/ 00 |2 7
.
2
1/10/ 007|2 19
07 10 20 7| .21
2
12/06/2008| .22
/3 /2 09 2.2
2/ 0/ 00 |2 4
.
2
6/26/ 009|2 26
12 15 20 9| .27
2
06/29/2010| .29
2
12/30/2010| .30
/3 /2 10 2.3
6/ 0/ 01 |2 2
12 30 20 1| .34
2
06/30/2011| .36
2
12/29/2012| .38
2
06/26/2012| .40
/2 /2 13 2.4
6/ 01 |2 2
20 3| .4
14 2.44
|2 6
.4
8

LOINC Codes Over Time by Release

80,000

70,000

10,000
LOINC Codes

Only Lab LOINC Codes

60,000

50,000

40,000

30,000

20,000

laboratory terms only

35,000+ registered users in 163 countries

You might be thinking

Like LOINC, SNOMED CT, RxNORM, etc
are all pretty mature now

Only crazy people would

manage their own terminology!

photo via Tatiana Gerus

LOINC has Pretty Good Coverage

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 content

in most systems.

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

The Regenstrief Dictionary

photo via muffet

Indiana Network for Patient Care

Referral Labs, RxHub, etc

St. Vincent

St. Francis

Global Patient
Index

IUMG

Concept
Dictionary

IU Health

Global Provider
Index

Community
Wishard Health

Public Health

Regenstrief Dictionary
Core interface terminology
HIE services and CPOE at one institution

Progenitor of LOINC
More than 43,000 terms
Questions, answers, and units

Term Attributes
ID

13793

Universal Name

CD3+CD4+ Cells

Description

Number 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)

Code (class)

Source

IU Spec Hem

Synonyms

Total T(T4); Abs T4; IU257; CD4 Abs (Helper T); Abs T (T4/CD4)

Mappings
Mapped to standard vocabularies
(ICD, LOINC, SNOMED CT, etc)
All source codes from local institutions
are mapped to Dictionary terms

Lessons Learned
Along the Way
photo via IMLS DCC

Lesson 1.
Life is messy.

HL7 messages can be

syntactically correct but
semantically bastardized.
68 different terms for

Everything is an OBX.
Everything in the NTE.

Pathologist Name

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.

Were Not Alone

Units for platelet counts in Mini-Sentinel
Blank
%
/100 W
/CMM
CMM
10 3 L
10X3UL
10^3/UL
10*3/uL
10?3/uL
10E3/uL
10e3/uL
10e9/L
E9/L
BIL/L
bil/L
CU MM

FL
K/CMM
k/cmm
K/CU MM
K/CUMM
K/MCL
K/mcL
K/UL
k/uL
KU/L
K/MM3
K/mm3
LB
PLATELET CO
T/CMM
TH/MM3
th/mm3

TH/UL
THOU/CMM
thou/cmm
thou/mm3
THOU/UL
THOUS/CU.MM
THOUS/MCL
THOU/mcL
THOUS/UL
Thou/uL
THOUSA
THOUSAND
THOUSAND/UL
U
X 10-3/UL
X 10(3)/UL
X10 3

X10(3)
1000/UL
X10(3)/MCL
X10(3)/UL
X10(6)/MCL
X10*9/L
X10E3/UL
X1000
X10X3
X10^3/UL
x10
X10?3/ul
X10E3/UL
X10E3
K/A?L
K/B5L

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.

Lesson 2.
Terminology management is hard.

A short history of modernist painting (part 2) by Mark Tansey

photo via brainblogger

It might not be brain

surgery, but it requires both
expertise and effort that 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.

A journey, not a
destination.

Across many INPC

institutions, in 2 years after
go live we saw half as many
new local terms appear as
what we started with.
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.

Meanwhile, weve always

struggled to find adequate
funding for this work.

photo via Vincent Anderlucci

Lesson 3.
Clear descriptions are king.

photo via JD Hancock

Descriptions are King

Humans need to choose terms accurately
Clear, concise text descriptions for each
term are essential.
We didnt always understand this.

photo via _fxr

Good Descriptions
Distinguishes this concept from others
Describes what the heck it is
What does it measure?
What is it used for?
What is the clinical relevance?
How is the test performed?
photo via _fxr

Lesson 4.
Sometimes we bend the rules.

photo via AndYaDontStop

We love the desiderata, but

Sometimes we cant get the software
development done right, so we make
compromises with the terminology.
Terms are cheap!

Examples:

- Paul Dexter

violate concept orientation

flowsheet display of tests in multiple panels

writing transforms for everythings an OBX HL7
inelegant context representation
Cimino JJ. Desiderata for controlled medical vocabularies in the 21st century. Meth Inform Med 1998;37:394403.

Lesson 5.
Work smarter, not harder.

photo via consumerist

Pareto Principle
Not every term has equal value
Cumulative Laboratory Observation Volume (%)

100%
90%
80%
70%

In INPC, 80 codes

60%
50%
40%

made 80% of volume

30%
20%
10%
0%

500

1000

1500

2000

2500

3000

3500

4000

Number of Laboratory Observation Codes (N)

Vreeman DJ, Finnell JT, Overhage JM. A rationale for parsimonious laboratory term mapping by frequency.
AMIA Annu Symp Proc. 2007 Oct 11:771-5. PubMed PMID: 18693941.

Upstream standardization.
Ask instrument or test kit
manufacturers.
photo via Fishking_1

Lesson 6.
Standards that get used get better.

Sharing is Caring
Standards will get better if users help
improve them through new term requests.
We built this concept into LOINC license & culture from the beginning.

Most local vocabulary work is done in

isolation at each institution and not shared.
Even among users of the same vendor.
Novel uses of crowd-sourcing? Need a connection back to standards.
On the mapping front, see https://loinc.org/community/mappings

Pros and Cons

Weighing the benefits and costs of
maintaining a local master dictionary

photo via neurmadic aesthetic

Pros

Hugely valuable

1. Ultimate control
2. Single code system for
applications across all
content domains

Cons
1. Expensive
2. Cant easily use tools from
others
3. Others cant use our innovation
applications as easily

We love local terms!

We love standards!

Were trying to find

harmony using local terms
and standards together

photo via scarlatti2004_images

danielvreeman.com/speaking

photo via milos milosevic