2015 04 - how to make your project an overnight success (in 20 years)
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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
© 2015
How to make your project an overnight success
(in 20 years)
Regenstrief Work-In-Progress Presentation
LogicalObservationIdentifiersNames andCodes
A universal code system that facilitates exchange, pooling, and processing of clinical data.
Rhymes with OINK!
Established in 1994 by Regenstrief Institute.
Vocabulary standard for observation identifiers.
LOINC is like a bar code for test data…
Laboratory LOINC
Clinical LOINC
A Rich Encyclopedia
Cells.HPV E6+E7 mRNA/cells [Presence] in Cervix by Flow cytometry (FC)
Most human papilloma virus (HPV) genomes encode for eight major proteins, six "early" (E1, E2, E3, E4, E6, and E7) and two "late" (L1 and L2). The "early" are regulatory in function. E6 and E7 genes in high-risk HPV genotypes are known as oncogenes because of their continuous expression, which leads to disruption of cell-cycle check points and cell genome instability through alteration of cellular p53 and retinoblastoma protein functions. This test identifies cervical cells containing HPV E6 and E7 polycistronic mRNA using in situ hybridization with oligonucleotides specific for the mRNA transcripts. The cells remain intact, and following fixation and permeabilization, the probes enter the cells. The flow cytometer measures two things: 1. Quantification of E6 and E7 mRNA in each cell and 2. The percentage of cells over-expressing E6 and E7 mRNA.
Our vision is for LOINC to be integrated into every clinical information system that shares or aggregates data.
2015 is off to a good start
Not just talking about Duke Basketball…
Collaboration Agreement with bioMérieuxDecember 18, 2014
Novel LOINCing contract with large IVD company
Phase 1 launched in January 2015
In 150 countries 2014 revenue of $1.90 billion
FDA Adds LOINC to List of Recognized StandardsJanuary 27, 2015
ONC 2015 Interoperability Standards AdvisoryJanuary 30, 2015
Section I: Best Available Vocabulary/Code Set/Terminology Standards
Qatar Adopts LOINCFebruary 11, 2015
37,500+ registered users in 166 countries
ONC 2015 Standards and Certification Criteria NPRMMarch 30, 2015
118 pages. 119 mentions of LOINC.
Need LOINC for these CriteriaComputerized provider order entry—laboratory
Vital signs, body mass index, and growth charts
Clinical Decision Support
Patient-specific education
Social, psychological, and behavioral data
Transitions of care
Incorporate laboratory tests and values/results
Transmission of laboratory test reports
Data portability
Care Plan
Clinical Quality measures - record and export
Clinical Quality measures - import and calculate
View, download, transmit to 3rd party
Transmission to public health agencies - reportable lab tests and values
Transmission to cancer registries
Transmission to public health agencies - antimicrobial use and resistance reporting
Transmission to public health agencies - health care surveys
Consolidated CDA creation performance
Application access to Common Clinical Data Set
Electronic submission of medical documentation
Know LOINC? Get Hired!March 30, 2015
Overnight success is largely a myth
Pixar is seen by a lot of folks as an overnight success, but if you really look closely, most
overnight successes took a long time. - Steve Jobs
photo via wiredphotostream
How long does it take to become an overnight success?
9 actual full songs to get that scene right
Take Home Message
Avoid the extremes of thinking:
My project is going to be the next Uber!
That would never work for my project!
Steady growth of LOINC(not exponential)
Registered LOINC Users
0
5,000
10,000
15,000
20,000
25,000
30,000
35,000
40,000
6/1/08
12/1/
086/1
/09
12/1/
096/1
/10
12/1/
106/1
/11
12/1/
116/1
/12
12/1/
126/1
/13
12/1/
136/1
/14
12/1/
14
LOINC Terms by Release
0
10,000
20,000
30,000
40,000
50,000
60,000
70,000
80,000
4/24/1
995 | 1.0
5/24/1
995 | 1.0
a
6/23/1
995 | 1.0
b
6/28/1
995 | 1.0
c
7/14/1
995 | 1.0
d
9/15/1
995 | 1.0
e
12/21/1
995 | 1.0
f
4/28/1
996 | 1.0
g
8/29/1
996 | 1.0
h(2)
12/3/1
996 | 1.0
h(3)
1/8/1
9997 | 1.0
i
10/9/1
997 | 1.0
j-a
5/1/1
998 | 1.0
k
2/12/1
999 | 1.0
l
7/23/1
999 | 1.0
m
8/6/1
999 | 1.0
ma
2/4/2
000 | 1.0
n
6/13/2
000 | 1.0
0
1/1/2
001 | 2.0
0
1/31/2
001 | 2.0
1
7/1/2
001 | 2.0
3
1/1/2
002 | 2.0
4
2/1/2
002 | 2.0
5
2/19/2
002 | 2.0
6
8/1/2
002 | 2.0
7
9/1/2
002 | 2.0
8
5/1/2
003 | 2.0
9
10/1/2
003 | 2.1
0
1/1/2
004 | 2.1
1
2/1/2
004 | 2.1
2
12/1/2
004 | 2.1
3
12/1/2
004 | 2.1
4
6/1/2
005 | 2.1
5
12/1/2
005 | 2.1
6
6/1/2
006 | 2.1
7
12/21/2
006|2.1
9
6/21/2
007|2.2
1
12/03/2
007|2.2
2
7/10/2
008|2.2
4
1/10/2
009|2.2
6
07/06/2
009|2.2
7
12/30/2
009|2.2
9
2/26/2
010|2.3
0
6/15/2
010|2.3
2
12/29/2
010|2.3
4
06/30/2
011|2.3
6
12/30/2
011|2.3
8
6/30/2
012|2.4
0
12/30/2
012|2.4
2
06/29/2
013|2.4
4
12/26/2
013|2.4
6
06/26/2
014|2.4
8
12/22/2
014|2.5
0
LOINC Codes
Only Lab LOINC Codes
LOINC Downloads By Release
0
2,000
4,000
6,000
8,000
10,000
12,0002.23
2.25
2.27
2.29
2.32
2.34
2.36
2.38
2.40
2.42
2.44
2.46
2.48
1. Ask what won’t change?
photo via moopasture
2. Build a platformGet people interested in what you have to say
photo via brett-sayer
We haven’t always done this very well
A
B -12%
Now, 2,000 Subscribers and Growing
3. Plan to evolve. Try to be graceful.
photo via Dawn Huczek
3. Plan to evolveTry to be graceful.
Standardized Assessments and Collections
Vreeman DJ, McDonald CJ, Huff SM. Representing patient assessments in LOINC®. AMIA Annu Symp Proc. 2010;832-836. PMID: 21347095 . Vreeman DJ, McDonald CJ, Huff SM. LOINC® - A Universal Catalog of Individual Clinical Observations and Uniform Representation of Enumerated Collections. Int J Funct Inform
Personal Med. 2010;3(4):273-291.
Deckard J, McDonald CJ, Vreeman DJ. Supporting interoperability of genetic data with LOINC. J Am Med Inform Assoc. 2015 Feb 5.
LOINC Has Codes For…Mutation analysis
Trinucleotide repeats
Large deletion/duplications
Chromosomal alterations
Aneuploidy/Uniparental disomy (UPD)
Karyotyping
Clonality in leukemia and lymphomas
Paternity testing
Forensic testing
Emerging Testing DomainVaried formats and naming conventions
Many local names just include disorder
But, need to know what is being tested for
Most genetic test results sent as narrative text Discrete data is much better (e.g. mutations found, interpretation, recommendations)
Recommended some steps to incrementally improve from narrative to structured
AcknowledgementsLOINC Development Team Jami Deckard, Katy Holk, Swapna Abhyankar, Rachel Fuhr, David Baorto, Clem McDonald
RELMA Development Team John Hook, Anandhi Sowmyan, James Dennis
Others LOINC Committee, Theresa Pritchard,
Sandy Poremba
Financial SupportMany sources AHCPR, APTA*, ASPE, bioMérieux*, CDC, CHCF, CMS, Hartford Foundation, IN CTSA, Regenstrief Foundation*, Regenstrief Institute, NCRR, NIBIB*, NLM*, LOINC User Community* *active now
Today, the U.S. National Library of Medicine (NLM) accounts for about 2/3 of our funding.
photo via milos milosevic
Take Home Message
Avoid the extremes of thinking:
My project is going to be the next Uber!
That would never work for my project!
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