Clinical LOINC Meeting | Salt Lake City, UT USA

Panels, Forms, Assessment
Instruments

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
Overview
1. Base model for panels
2. Advanced model of panel attributes
3. LOINC Answers
4. Panel and Answer features in RELMA
5. Sample of the content
6. Key adoptions
7. Lessons learned

photo via Vernio77
Base Model for
Panels in LOINC
Panels in LOINC
Collector terms that contain links to an
enumerated set of discrete child elements

We use the word “panel” a generic concept
that synonymous with battery, form, data
set, etc in other domains
Child Elements
For observations, the LOINC name
is your key to mapping

For panels, the enumeration of child
elements is the key
A Familiar Example

On the Details page for panel
terms, the first block shows
the panel definition
Panels canelements
Define themselves
as be children,
Required,
Optional, or Conditionally
which allows nesting Present
Categorizing Panel Elements
see User’s Guide section 8.7 “Representing conditionality”
Required (R)
Always expected to be present
Required with alternatives (R-a)
Always expected to be present, but with alternatives. (Typically a pair)
Optional (O)
May not be reported with panel depending on policy or capabilities of reporting
institution
Conditional (C)
A key part of the panel, and should be assumed to be negative or not present if
results do not contain it
Reflex (Rflx)
Included if it satisfies a reflex condition based on other results in the panel
Null ()
Undeclared. Typically used in “convenience” panels
Naming Conventions for Panels
see massively revised Section 8 in LOINC Users’ Guide

Many (most) include panel in the Component

If defined by an authoritative body, we tend to
use the official name

If elements vary on axis values (e.g. Property),
the panel term name uses a dash “-“ in that field

Timing, Scale, and Method are typically specified
What Defines a Panel?
see Section 13 in User Guide for full rules and examples

Or, when can I map my local one to a
LOINC one?

With help from the S&I Framework
Initiative, we developed a set of business
rules for panels

The following is a brief summary
Business Rules for Panels
1. Must contain all of the required elements
2. No extra primary measurements
3. Optional elements are optional
4. Substitutions of a method-specific code
for a methodless one are allowed, but not
vice versa
5. Substitutions for mass versus substance
Properties are allowed (newest rule)
Business Rules for Panels
5. No substitutions of quantitative
for qualitative (and vice versa)
6. Pay attention to reflex
components
7. Panels with only narrative
definitions of the elements they
should contain
Advanced model of panel
attributes in LOINC
An expansion that grew out of our work to
represent standardized assessment instruments
LOINC could be a
master question
file and uniform
representation
Iterative Refinement
Started about 10 years ago

Informing ideas:
Survey instruments have psychometric properties
Question meaning tightly coupled with answers

Many collaborators
esp Tom White, Susan Bakken
CHI Functioning and Disability workgroup
ASPE, AHIMA, CMS, RTI, HL7, HITSP
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.
Assessment Instruments
Widely used…

…and not unlike other kinds of observations
Item-level Attributes
Question Text
Question Source
External Copyright
Terms of Use
Description/Definition
Units of Measure (UCUM)
Data Types
Structured Answer Lists
Answer List Attributes
ID (contains “LL” prefix)
OID
External Link

Answer Item Attributes
ID (contains “LA” prefix)
String
Sequence
Local code
Universal code (SNOMED CT)
Score
Attributes of Items in a Panel Instance
Display name override
Coding instructions
Cardinality
Local code on that form
Skip logic
Data type in form
Answer sequence override
Consistency/validation checks
Images
Panels Available as Separate Download
Look for the “Panels and Forms File”
LOINC Answers
LOINC Answers
LOINC is focused on “questions”, but…

Sometimes, questions are best understood by
knowing the set of allowed answer choices

Many answer choices are highly specialized
and not present in vocabulary standards
Linking LOINC terms
to answer lists
Categories of Binding Strength
Onset of labor [US Standard
Certificate of Live Birth] (73774-2)
Normative
This is it. Don’t mess with it.

Only the specified answers allowed
Does NOT mean you MUST use LA codes

Defined by authoritative source
Examples: PROMIS, PHQ, etc

Tip: Often, the Method identifies the source
Preferred
Strongly encouraged

Alternate answers may be used

Also often from a recognized source
Professional associations, device/instrument
manufacturers, or government agencies.
Example
Illustrative. A starter set.

Alternate answers may be used

Most answer lists for lab LOINC
codes are Example lists
Example => Starter set, but you could use more or less
MAPPING CAUTION

photo via SMcGarigle | cc-by
Normative => This is it. Don’t
mess with it!
Proper use of LOINC question
codes with assessment
instrument methods
Blog post that answers the question “when is it ok to reuse
a LOINC question from an existing instrument?”
Panel Features in
RELMA
A sample of the LOINC content…
US Government Forms My Mood Monitor
CARE, MDSv2, MDSv3, OASIS B1, Neonatal Skin Risk Assessment Scale
OASIS C, RFC, US Surgeon Neuro-QOL
General’s Family Health Portrait,
End Stage Renal Disease forms NIH Stroke Scale

Borderline Symptom List - 23 Item OMAHA
Brief Interview for Mental Status (BIMS) OPTIMAL
CARE long term care hospital (LTCH) PROMIS
Confusion Assessment Method (CAM) PhenX
Core behavioral health terms (SAMHSA) PHQ (9 and 2)
Edinburgh Postnatal Depression Scale Quality Audit Marker (QAM)
FACIT VR 12 and 36
Geriatric Depression Scale (GDS)
HIV Signs and Symptoms Checklist
Home Health Care Classification 10,000+ terms in this area
howRU Adding more all the time
Living with HIV (LIV-HIV)
Morse Fall Scale
Find Panels and Forms in RELMA
Hit this!
Lab Panels
Clinical Assessments, Scales, Panels
Panels for Clinical Documents
Non-lab Diagnostic Studies
U.S. Government
Survey Instruments (Patient Reported)
View Panel Children

Select “View Panel Children”
from context menu
Panel Children
Find Panels that Contain this Term

Select “Find Panels with All
These LOINCs” from context
Find Panels that Contain this Term
Also on Comprehensive Details Pages

These panels all contain this Creatinine term
Export the Full Panel Structure
LOINC adoption here is
gaining some traction…
2006
Social, Psychological, and Behavioral Data
Financial resource strain
Education
Stress
Depression
Physical activity
Alcohol use
Social connection and isolation
Exposure to violence
All have specific LOINC codes identified
CMS Data Element Library
4,600+ data elements from CARE, MDS, CARE-LTCH, OASIS

Responsive to IMPACT Act

Overall goals:
• Uniformity across CMS assessments and quality measures
• Authoritative resource for patient assessment data elements
• Promote the sharing of electronic patient assessment data
sets and information standards
• Promote EHR interoperability and care coordination

Mapped to LOINC and other national vocabularies
CMS Data Element Library
We recently kicked off contract to
answer questions about existing
term modeling and to create new
content as data elements are
harmonized
Questionnaires in FHIR
DataElements in FHIR (work in progress)
Pilot Apps demonstrating
LOINC form Power

NLM LForms tool
Merck ePRO tool
powered by OpenMRS
https://lhc-forms.lhc.nlm.nih.gov
Lesson 1
Variation abounds
Despite
similarity in
items, much
variation exists
…many differences might have been avoided
Original PHQ-9

CARE

MDSv3
MDSv2
Frequency with which resident complains or shows evidence of pain (in last 7 days)?
No pain, Pain less than daily, Pain daily

MDSv3
How much of the time have you experienced pain or hurting over the last 5 days?
Almost constantly, Frequently, Occasionally, Rarely, Unable to answer

CARE
Have you had pain or hurting at any time during the last 2 days?
Yes, no, unable to respond

OASIS-B1
Frequency of Pain Interfering with patient's activity or movement
Patient has no pain or pain does not interfere with activity or movement, Less often than
daily, Daily but not constantly, All of the time

OASIS-B2
Frequency of Pain Interfering with patient's activity or movement
Patient has no pain, Patient has pain that does not interfere with activity or movement, Less
often than daily, Daily but not constantly, All of the time
Lesson 2
IP issues present large
challenges
Weigh the cost of losing
comparability before
inventing something new

photo via neurmadic aesthetic
Lesson 3
Not all use-cases need
everything
Evolve gracefully.
photo via Dawn Huczek
Less than the best is sometimes OK
Quality measures, registries, etc might not
need whole scored instrument

Stingy IP holders resist full modelling

Purposes fulfilled with just:

Name of some specific instrument used
Total score from a particular instrument
Graceful Evolution
1. Create "panel" codes that represent
the named instrument
2. Create a total score term (as a child) for
the instruments where score is needed
3. When they are needed, fully model the
instrument as a complete set of
questions (with answers where
appropriate)