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Clinical LOINC Meeting




     Clinical LOINC® Tutorial
     Panels, Forms, and Patient Assessments

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




07.15.2010                                                           Copyright © 2010
Overview
•  Background
•  Standard Panels in LOINC
•  Enhanced Panel Model for Patient
   Assessment Instruments
•  Current Projects
•  Lessons Learned
Standard Panels in LOINC
Enumerated child elements
Panels (Batteries) in LOINC
•  Panel term linked to enumerated child elements
    –  Child elements can be panels themselves (nesting)
•  Panel term names (under discussion)
    –    Component       often have “panel”, include authoritative source
    –    Property        typically “-” because child elements will vary
    –    Scale           typically “-” because child elements will vary
    –    Class           PANEL.*
•  Child elements linked and identified as:
    –  Required (R)      Element always reported with panel
    –  Optional (O)      Element may not be reported depending on
                         institutional policies or capabilities
    –  Conditional (C)   Element is a key finding and thus should be
                         assumed to be negative, absent, or not present if
                         panel result does not include data for this
                         element.
Example Panel
Example Panel with Nesting
Clinical Panels
Patient Assessments in
LOINC
Iterative enhancements of the panel model
Upcoming AMIA 2010 Paper
Introduction
•  Patient assessments are widely used to measure a broad
   range of health attributes
   –  Functional status, depression, health-related quality of life, etc
   –  Survey instruments, questionnaires, assessment forms, etc
•  Observations from patient assessments (whether
   clinician-observed or self-report) are in many respects
   very similar to other kinds of clinical observations
•  Survey instruments have psychometric properties
•  Question meaning tightly coupled with answers

General Aim: LOINC could serve as a “master question file”
          and provide a uniform representation
Approach
•  Iterative refinement of the base panel model as
   we added new content
  –  Kept uncovering new wrinkles
•  Collaborated with many people
  –  Tom White, CHI Functioning and Disability
     workgroup, APSE, AHIMA, CMS, RTI, HL7, HITSP, and
     others
•  Represent the full assessment content with
   attributes at three levels
  –  Individual item, answer list, panel-specific item
     instance
Attributes of Assessment Items
•  Question (item) name/text
     –  Exact question text, form-specific display name
•    Data type
•    Definition/description
•    For numeric values: units of measure, range checks
•    For categorical results: answers in an answer list
•    Copyright and terms-of-use notices
•    HL7 field sub-id
•    HL7 data types (v2 and v3)
Structured Answer Lists
•  Many items have highly specialized, fixed answer lists
   –  Often the answer lists define the meaning of the question
   –  Few are represented by existing codes in reference terminologies
•  LOINC has created answer codes where needed
   –  Have “LA” prefix and a mod-10 check digit
   –  Are unique by lexical string (ignoring capitalization)
   –  Intentionally do NOT distinguish based on context-specific meaning
•  In some cases, the answer list is identified with a
   Regenstrief-assigned OID (for HL7 CDA use)
   –  Identify lists as “normative” vs “example”
•  Answer list shows sequence, but not bound by it
•  Store local codes for items and have place to store
   universal code (e.g. SNOMED) if we’re able
Attributes of Items in a Panel Instance
•  Some non-defining attributes of an item vary by panel
   –  Vary across instruments or different forms of the same
      assessment
•  Represented at the level of the item instance in a panel
   –    Display name override (e.g. “BMI” vs “Body Mass Index”)
   –    Cardinality
   –    Observation ID in form (local code)
   –    Skip logic
   –    Data type in form
   –    Answer sequence override
   –    Consistency/validation checks
   –    Relevance equation
   –    Coding instructions
Advantages of the Master Catalog
•  Single database (LOINC) contains the details
   about individual observations and sets
  –  In the database, all forms (sets) look the same
  –  Automatic standardization
•  Separates the form structure, question details,
   the rendered version (paper or screen), and the
   program that manages it
•  Can easily reuse observations (and attributes)
   in different forms/sets
Panels/Forms Available as
          Separate Download
http://loinc.org/downloads
Rules for Display of Items
•  SURVEY_QUEST_TEXT (if populated). Used when item is asked as
   a question. Sometimes the item has a label and a question, so we
   store both as [label].[question text]

   Pain Presence. Ask resident: “Have you had pain or hurting at
   any time in the last 7 days?”

•  DISPLAY_NAME_FOR_FORM (if populated). Provides an override
   display linked to the instance of the LOINC in a particular form.
   Allows for presentation variation that doesn’t affect meaning and
   for where the LOINC naming conventions require some difference
   b/w the item and the LOINC Component.

   Item label = “Body Mass Index (BMI)”
   LOINC Component = “Body mass index”

•  COMPONENT. This is the default display
Successes and Current
Projects
Currently in LOINC
•  US Government Forms
      –  CARE, MDSv2, MDSv3, OASIS B1, OASIS C RFC
      –  US Surgeon General’s Family Health Portrait
•    Brief Interview for Mental Status (BIMS)
•    Confusion Assessment Method (CAM)
•    Geriatric Depression Scale (GDS)
•    HIV Signs and Symptoms Checklist
•    Home Health Care Classification
•    howRU
•    Living with HIV (LIV-HIV)
•    Morse Fall Scale
•    OMAHA
•    PHQ (9 and 2)
•    Quality Audit Marker (QAM)
Find them in RELMA
ASPE as Key Supporter
•  ASPE (Jennie Harvell) has championed use of
   HIT standards for assessment instruments in
   many venues
•  Initial Reports
  –  Making the "Minimum Data Set" Compliant with
     Health Information Technology Standards
  –  Standardizing the MDS with LOINC® and Vocabulary
     Matches
Consolidated Health Informatics
•  CHI Goal:
  –  Adopting interoperability standards for all US federal
     health agencies
•  Adopted LOINC as standard
  –  Laboratory result names (2003)
  –  Laboratory test order names (2006)
  –  Meds: structured product labeling sections (2006)
  –  Federally-required patient assessment instruments
     with functioning and disability content (2007)
Many Other Opportunities
•  PhenX Measures
•  PROMIS
•  Neuropsychological testing instruments (APA)
•  Lots of other commonly-used instruments
   (SF-36, etc)
•  CDC case report and other forms
•  National physical therapy outcomes database
   measures
Challenges and Lessons
Learned
Corralling the Creativity
Lesson 1
Variation Abounds
Variation Abounds
•  Despite many instruments now in LOINC,
   reuse of items has been minimal
  –  E.g. extremely few of same items b/w MDSv2
     and MDSv3
  –  MDSv3 has greater similarity to CARE, but the
     lookback period is different (7D vs 2D)
•  We noticed differences that might have
   been avoided
•  Urge developers to weigh the cost of
   losing comparability before inventing
Original PHQ-9




    CARE




   MDSv3
MDSv2




MDSv3



OASIS


CARE
Lesson 2
Starting from a uniform data model may bring clarity
A Uniform Data Model Would Help
•  We usually started from paper forms, though some instruments had
   their own software and data structures
•  Forced to reconcile many potential discrepancies
   –    “Unknown”/“unable to determine” as answer choices vs flavors of null
   –    How do you store “Other specified ______”
   –    Units of measure implied?
   –    Which text is the item and which is “help”
•  Incongruence with the HL7+LOINC model
   –  Items for things that could go in PID, etc
   –  Flat data model vs stacked
   –  Every ‘Check all that apply’ stored as separate yes/no item
•  Interoperable data exchange standards haven’t been in the minds
   of survey developers
•  Starting with the LOINC model may elucidate hidden challenges
Many Yes/No Diseases
Lesson 3
IP issues present large challenges
Intellectual Property Issues
•  Must negotiate separate agreements with each
   copyright/IP holder for inclusion in LOINC
•  Many instruments have difficult restrictions
   –  Protection against change and attribution are understandable
   –  Some want royalties
   –  Commercial use in LOINC’s context is tricky
•  Even more complicated when several instruments
   included in larger CMS ones (MDS, CARE, etc)
•  Funders should require developers to avoid such
   restrictive licenses
Lesson 4
Always new challenges
Always New Challenges
•  Answer list sequences
  –  Same answers across instruments but different order
•  Skip logic shown at level of answer
  –  Current strategy is to aggregate up to question level
•  Items with pictures
•  Computer-adaptive testing coefficients and
   attributes

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2010 07 15 - Clinical LOINC Tutorial - Patient Assessment Instruments

  • 1. Clinical LOINC Meeting Clinical LOINC® Tutorial Panels, Forms, and Patient Assessments Daniel J. Vreeman, PT, DPT, MSc Assistant Research Professor, Indiana University School of Medicine Associate Director of Terminology Services, Regenstrief Institute, Inc 07.15.2010 Copyright © 2010
  • 2. Overview •  Background •  Standard Panels in LOINC •  Enhanced Panel Model for Patient Assessment Instruments •  Current Projects •  Lessons Learned
  • 3. Standard Panels in LOINC Enumerated child elements
  • 4. Panels (Batteries) in LOINC •  Panel term linked to enumerated child elements –  Child elements can be panels themselves (nesting) •  Panel term names (under discussion) –  Component often have “panel”, include authoritative source –  Property typically “-” because child elements will vary –  Scale typically “-” because child elements will vary –  Class PANEL.* •  Child elements linked and identified as: –  Required (R) Element always reported with panel –  Optional (O) Element may not be reported depending on institutional policies or capabilities –  Conditional (C) Element is a key finding and thus should be assumed to be negative, absent, or not present if panel result does not include data for this element.
  • 8. Patient Assessments in LOINC Iterative enhancements of the panel model
  • 10. Introduction •  Patient assessments are widely used to measure a broad range of health attributes –  Functional status, depression, health-related quality of life, etc –  Survey instruments, questionnaires, assessment forms, etc •  Observations from patient assessments (whether clinician-observed or self-report) are in many respects very similar to other kinds of clinical observations •  Survey instruments have psychometric properties •  Question meaning tightly coupled with answers General Aim: LOINC could serve as a “master question file” and provide a uniform representation
  • 11. Approach •  Iterative refinement of the base panel model as we added new content –  Kept uncovering new wrinkles •  Collaborated with many people –  Tom White, CHI Functioning and Disability workgroup, APSE, AHIMA, CMS, RTI, HL7, HITSP, and others •  Represent the full assessment content with attributes at three levels –  Individual item, answer list, panel-specific item instance
  • 12. Attributes of Assessment Items •  Question (item) name/text –  Exact question text, form-specific display name •  Data type •  Definition/description •  For numeric values: units of measure, range checks •  For categorical results: answers in an answer list •  Copyright and terms-of-use notices •  HL7 field sub-id •  HL7 data types (v2 and v3)
  • 13. Structured Answer Lists •  Many items have highly specialized, fixed answer lists –  Often the answer lists define the meaning of the question –  Few are represented by existing codes in reference terminologies •  LOINC has created answer codes where needed –  Have “LA” prefix and a mod-10 check digit –  Are unique by lexical string (ignoring capitalization) –  Intentionally do NOT distinguish based on context-specific meaning •  In some cases, the answer list is identified with a Regenstrief-assigned OID (for HL7 CDA use) –  Identify lists as “normative” vs “example” •  Answer list shows sequence, but not bound by it •  Store local codes for items and have place to store universal code (e.g. SNOMED) if we’re able
  • 14. Attributes of Items in a Panel Instance •  Some non-defining attributes of an item vary by panel –  Vary across instruments or different forms of the same assessment •  Represented at the level of the item instance in a panel –  Display name override (e.g. “BMI” vs “Body Mass Index”) –  Cardinality –  Observation ID in form (local code) –  Skip logic –  Data type in form –  Answer sequence override –  Consistency/validation checks –  Relevance equation –  Coding instructions
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  • 19. Advantages of the Master Catalog •  Single database (LOINC) contains the details about individual observations and sets –  In the database, all forms (sets) look the same –  Automatic standardization •  Separates the form structure, question details, the rendered version (paper or screen), and the program that manages it •  Can easily reuse observations (and attributes) in different forms/sets
  • 20. Panels/Forms Available as Separate Download http://loinc.org/downloads
  • 21. Rules for Display of Items •  SURVEY_QUEST_TEXT (if populated). Used when item is asked as a question. Sometimes the item has a label and a question, so we store both as [label].[question text] Pain Presence. Ask resident: “Have you had pain or hurting at any time in the last 7 days?” •  DISPLAY_NAME_FOR_FORM (if populated). Provides an override display linked to the instance of the LOINC in a particular form. Allows for presentation variation that doesn’t affect meaning and for where the LOINC naming conventions require some difference b/w the item and the LOINC Component. Item label = “Body Mass Index (BMI)” LOINC Component = “Body mass index” •  COMPONENT. This is the default display
  • 23. Currently in LOINC •  US Government Forms –  CARE, MDSv2, MDSv3, OASIS B1, OASIS C RFC –  US Surgeon General’s Family Health Portrait •  Brief Interview for Mental Status (BIMS) •  Confusion Assessment Method (CAM) •  Geriatric Depression Scale (GDS) •  HIV Signs and Symptoms Checklist •  Home Health Care Classification •  howRU •  Living with HIV (LIV-HIV) •  Morse Fall Scale •  OMAHA •  PHQ (9 and 2) •  Quality Audit Marker (QAM)
  • 24. Find them in RELMA
  • 25. ASPE as Key Supporter •  ASPE (Jennie Harvell) has championed use of HIT standards for assessment instruments in many venues •  Initial Reports –  Making the "Minimum Data Set" Compliant with Health Information Technology Standards –  Standardizing the MDS with LOINC® and Vocabulary Matches
  • 26. Consolidated Health Informatics •  CHI Goal: –  Adopting interoperability standards for all US federal health agencies •  Adopted LOINC as standard –  Laboratory result names (2003) –  Laboratory test order names (2006) –  Meds: structured product labeling sections (2006) –  Federally-required patient assessment instruments with functioning and disability content (2007)
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  • 29. Many Other Opportunities •  PhenX Measures •  PROMIS •  Neuropsychological testing instruments (APA) •  Lots of other commonly-used instruments (SF-36, etc) •  CDC case report and other forms •  National physical therapy outcomes database measures
  • 32. Variation Abounds •  Despite many instruments now in LOINC, reuse of items has been minimal –  E.g. extremely few of same items b/w MDSv2 and MDSv3 –  MDSv3 has greater similarity to CARE, but the lookback period is different (7D vs 2D) •  We noticed differences that might have been avoided •  Urge developers to weigh the cost of losing comparability before inventing
  • 33. Original PHQ-9 CARE MDSv3
  • 35. Lesson 2 Starting from a uniform data model may bring clarity
  • 36. A Uniform Data Model Would Help •  We usually started from paper forms, though some instruments had their own software and data structures •  Forced to reconcile many potential discrepancies –  “Unknown”/“unable to determine” as answer choices vs flavors of null –  How do you store “Other specified ______” –  Units of measure implied? –  Which text is the item and which is “help” •  Incongruence with the HL7+LOINC model –  Items for things that could go in PID, etc –  Flat data model vs stacked –  Every ‘Check all that apply’ stored as separate yes/no item •  Interoperable data exchange standards haven’t been in the minds of survey developers •  Starting with the LOINC model may elucidate hidden challenges
  • 38. Lesson 3 IP issues present large challenges
  • 39. Intellectual Property Issues •  Must negotiate separate agreements with each copyright/IP holder for inclusion in LOINC •  Many instruments have difficult restrictions –  Protection against change and attribution are understandable –  Some want royalties –  Commercial use in LOINC’s context is tricky •  Even more complicated when several instruments included in larger CMS ones (MDS, CARE, etc) •  Funders should require developers to avoid such restrictive licenses
  • 40. Lesson 4 Always new challenges
  • 41. Always New Challenges •  Answer list sequences –  Same answers across instruments but different order •  Skip logic shown at level of answer –  Current strategy is to aggregate up to question level •  Items with pictures •  Computer-adaptive testing coefficients and attributes