Pediatric HIT Standards: Pediatric HIT Standards: Where are we, where we Where are we, where we can go, and how we’re can go, and how we’re working to get there.working to get there.

Paul Biondich, MD, MSPaul Biondich, MD, MSRegenstrief Institute, Inc.Regenstrief Institute, Inc.Children’s Health Services Children’s Health Services

ResearchResearch

Tons of Press and Tons of Press and Excitement..Excitement..

Early 2004: paradigm shift in HIT Early 2004: paradigm shift in HIT discussiondiscussion

National HIT Coordinator / CzarNational HIT Coordinator / Czar Presidential and Bi-partisan political Presidential and Bi-partisan political

attention / supportattention / support Early hint of grant $Early hint of grant $ Attention of payorsAttention of payors Health IT: something I no longer have to Health IT: something I no longer have to

be embarrassed to talk about at clinic!be embarrassed to talk about at clinic! Medical Informaticians: in very high Medical Informaticians: in very high

demanddemand

.. But Lack of Progress / .. But Lack of Progress / UnhappinessUnhappiness

PractitionersPractitioners: EMRs don’t meet my : EMRs don’t meet my needs, data isn’t reusable like I thought needs, data isn’t reusable like I thought it’d be.. “empty shell syndrome”it’d be.. “empty shell syndrome”

Vendors / DevelopersVendors / Developers: No clear : No clear message as to what pediatrics wants, message as to what pediatrics wants, standards aren’t fully “baked” yet.. standards aren’t fully “baked” yet.. we we need consistent guidanceneed consistent guidance

AdministrationAdministration: Why isn’t everyone : Why isn’t everyone using EMRs? Why isn’t it all happening using EMRs? Why isn’t it all happening faster?! Healthcare must provide faster?! Healthcare must provide better qualitybetter quality

Nothing New?Nothing New?

Informaticians have been tackling Informaticians have been tackling these same issues for decadesthese same issues for decades

Fundamental misunderstandings Fundamental misunderstandings about HIT standardsabout HIT standards

Lack of commitment, resources / Lack of commitment, resources / substrate to enrich themsubstrate to enrich them

Regenstrief motto: “It’s all about Regenstrief motto: “It’s all about multi-use standardized data”multi-use standardized data”

Basic Introductory DefinitionsBasic Introductory Definitions

Functional StandardsFunctional Standards: how we want : how we want computer applications to behave for the computer applications to behave for the end user (calculate BMI, plot growth end user (calculate BMI, plot growth chart, generate “Vanderbilt” ADHD chart, generate “Vanderbilt” ADHD screen)screen)

Technical StandardsTechnical Standards: how a computer : how a computer understands, stores, and communicates understands, stores, and communicates information to other computersinformation to other computers– Messaging / Communication (HL7)Messaging / Communication (HL7)– Vocabulary (LOINC / SNOMED / RxNorm, etc)Vocabulary (LOINC / SNOMED / RxNorm, etc)– Medical Logic (Arden Syntax, GLIF, etc)Medical Logic (Arden Syntax, GLIF, etc)

Emerging Consensus in Emerging Consensus in Pediatric HITPediatric HIT

Advocacy for child HIT should get away from Advocacy for child HIT should get away from convincing public that pediatric IT needs are convincing public that pediatric IT needs are somehow “different”somehow “different”

Of course, pediatric EHR Of course, pediatric EHR functional functional standardsstandards lag behind.. but no different than in lag behind.. but no different than in most other specialties, and will always be a most other specialties, and will always be a “moving target”“moving target”

Existing/agreed upon Existing/agreed upon technical standardstechnical standards are established and will work are established and will work todaytoday for kids, for kids, but they most often lack pediatric content but they most often lack pediatric content specificityspecificity

Some Specific Examples of Some Specific Examples of GapsGaps

Childhood growth and development Childhood growth and development (milestones, risk stratification, behavioral)(milestones, risk stratification, behavioral)

Genetic / congenital disordersGenetic / congenital disorders Well care / anticipatory guidanceWell care / anticipatory guidance Pediatric chronic diseases (Asthma, Pediatric chronic diseases (Asthma,

ADHD)ADHD) Tons of “risk-based” screening topics Tons of “risk-based” screening topics

(lead exposure, iron deficiency, (lead exposure, iron deficiency, tuberculosis, etc)tuberculosis, etc)

Current Content Development Current Content Development ProcessProcess

Mostly anecdotal / specific needs-basedMostly anecdotal / specific needs-based Voluntary / good will effortVoluntary / good will effort Often driven by non-clinical Often driven by non-clinical

stakeholdersstakeholders Very little specialty organization Very little specialty organization

involvementinvolvement

Ironic given the importance of Ironic given the importance of vocabularies / concept dictionaries!vocabularies / concept dictionaries!

Where are the clinical Where are the clinical standards of care standards of care

documented?documented? Textbooks, research literature – Textbooks, research literature –

overwhelming! (Barnett)overwhelming! (Barnett) Clinical Guidelines / Policy Statements Clinical Guidelines / Policy Statements

– the “quick install guides” of medical – the “quick install guides” of medical care.. care.. – abstractedabstracted– often evidence-basedoften evidence-based– revised oftenrevised often– development processes well establisheddevelopment processes well established

Who develops these Who develops these documents?documents?

American Academy of PediatricsAmerican Academy of Pediatrics Many pediatric subspecialty groupsMany pediatric subspecialty groups American Academy of Family American Academy of Family

PracticePractice AHRQ / US Preventive Services Task AHRQ / US Preventive Services Task

ForceForce Many others.. clearinghouse group Many others.. clearinghouse group

aggregates these documentsaggregates these documents

A substrate for vocabulary and A substrate for vocabulary and communication standards?communication standards?

In one location, the following are In one location, the following are defined:defined:– Pertinent historical questions (cow’s milk Pertinent historical questions (cow’s milk

before a year of age?)before a year of age?)– Clinical observations of interest Clinical observations of interest

(hemoglobin, serum ferritin, weight)(hemoglobin, serum ferritin, weight)– Decision logicDecision logic– Task periodicityTask periodicity

More importantly, provide an important More importantly, provide an important developmental “starting point”developmental “starting point”

Problems with Current Problems with Current DocumentsDocuments

Ambiguous (infants, ill-appearing)Ambiguous (infants, ill-appearing) Unclear decision logicUnclear decision logic Coarse directionCoarse direction Often incomplete (don’t complete the Often incomplete (don’t complete the

thought loop) thought loop)

Help is on the way.. Help is on the way.. 1.1. PDSW Technical Expert PanelPDSW Technical Expert Panel

– Goal: creation of technical standards and Goal: creation of technical standards and related documentation for a specific related documentation for a specific pediatric topicpediatric topic

– Chosen topic: Asthma careChosen topic: Asthma care– Partnership underway with the NHLBI’s Partnership underway with the NHLBI’s

upcoming Asthma guidelineupcoming Asthma guideline– Attempts to create vocabularies from Attempts to create vocabularies from

current statement -> highlight needed current statement -> highlight needed changes for new versionchanges for new version

– Will submit related vocabularies to LOINC Will submit related vocabularies to LOINC / SNOMED, or map when already exist/ SNOMED, or map when already exist

Help is on the way.. Help is on the way..

2.2. Partnership for Policy Implementation Partnership for Policy Implementation (PPI)(PPI)

– AAP board recently approved a new program - AAP board recently approved a new program - revision and IT “operationalization” of AAP revision and IT “operationalization” of AAP policy and guideline statementspolicy and guideline statements

– Pediatric Informaticians working alongside Pediatric Informaticians working alongside topic specialists.. topic specialists..

– Algorithms and the granular concepts that Algorithms and the granular concepts that “drive” them“drive” them

– Ultimate future: vocabularies / medical logic Ultimate future: vocabularies / medical logic published alongside statementspublished alongside statements

Developmental Screening Developmental Screening ExampleExample

2001 Title: “Developmental 2001 Title: “Developmental Surveillance and Screening of Infants Surveillance and Screening of Infants and Young Children”and Young Children”

2005 Title: “Identifying Children with 2005 Title: “Identifying Children with Developmental Disorders in the Developmental Disorders in the Medical Home: An Algorithm for Medical Home: An Algorithm for Early Childhood:Early Childhood:

Algorithm-based GuidelinesAlgorithm-based Guidelines

Old vs. New: LogicOld vs. New: Logic

2001 Text: “Perform periodic 2001 Text: “Perform periodic screenings of all infants and young screenings of all infants and young children during preventive care visits”children during preventive care visits”

2005, Current Draft: “Perform 2005, Current Draft: “Perform structured screening for children who structured screening for children who appear normal at the 9, 18, and 30-appear normal at the 9, 18, and 30-month visits and targeted screening month visits and targeted screening where surveillance activities identify where surveillance activities identify any risk”any risk”

Old vs. New: VocabularyOld vs. New: Vocabulary

2001 Text: “Assess medical, genetic, 2001 Text: “Assess medical, genetic, and environmental risk factors while and environmental risk factors while taking routine medical, family, and taking routine medical, family, and social histories”social histories”

2005, Old Draft: “Social and 2005, Old Draft: “Social and Demographic Risk factors, including Demographic Risk factors, including high birth order, higher maternal age high birth order, higher maternal age and male gender; low maternal and male gender; low maternal education at the time of delivery” education at the time of delivery”

Old vs. NewOld vs. New

2005, Current Draft: “Social and 2005, Current Draft: “Social and Demographic risk factors include Demographic risk factors include being the third or later child in a being the third or later child in a family, maternal age greater than family, maternal age greater than 29, and male gender (Drews et al, 29, and male gender (Drews et al, 1995); maternal education of less 1995); maternal education of less than or equal to 12 years at the time than or equal to 12 years at the time of delivery..”of delivery..”

Our future plans..Our future plans.. Once the standards of care well Once the standards of care well

documented:documented:– Vocabulary can be built / mappedVocabulary can be built / mapped– Vocabularies built into systemsVocabularies built into systems– Data aggregation can happen across care Data aggregation can happen across care

settingssettings– Better opportunities to inform decision Better opportunities to inform decision

support and reminder logicsupport and reminder logic– Quality improvement efforts now have sorely Quality improvement efforts now have sorely

need measurement metricsneed measurement metrics– Infinite prospective and retrospective Infinite prospective and retrospective

research possibilitiesresearch possibilities

An Example: CHICAAn Example: CHICA Receives Receives

Patient-Patient-level EHR level EHR info via HL7info via HL7

Logic Logic encoded in encoded in Arden Arden SyntaxSyntax

OCR / OCR / PaperPaper

SampleSampleScreening Screening Form (PSF)Form (PSF)

SampleSamplePhysician Physician WorksheeWorkshee

t Formt Form

Vital Sign CalculationsVital Sign Calculations

Doctor’s Worksheet

(PWS)

Screening Form (PSF)

Physician Physician PreventivePreventive

Care Care RemindersReminders

Identifying Identifying Risk FactorsRisk Factors

ScreeningForm (PSF)

Physician Form Reminder

Questions / Curious?Questions / Curious?

My Email: My Email: pbiondich@regenstrief.orgpbiondich@regenstrief.org My Phone: 317-630-7070My Phone: 317-630-7070

PPI @ AAP: PPI @ AAP: hnoteboom@aap.orghnoteboom@aap.org TEP @ CDSW: TEP @ CDSW: dettel@hsc.usf.edudettel@hsc.usf.edu