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 ResearchChildren’s Health Services Research

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

Early 2004: paradigm shift in HIT discussionEarly 2004: paradigm shift in HIT discussionNational HIT Coordinator / CzarNational HIT Coordinator / CzarPresidential and BiPresidential and Bi--partisan political partisan political attention / supportattention / supportEarly hint of grant $Early hint of grant $Attention of Attention of payorspayorsHealth IT: something I no longer have to be Health IT: something I no longer have to be embarrassed to talk about at clinic!embarrassed to talk about at clinic!Medical Medical InformaticiansInformaticians: in very high : in very high demanddemand

.. But Lack of Progress / Unhappiness.. But Lack of Progress / Unhappiness

PractitionersPractitioners: : EMRsEMRs don’t meet my 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 guidanceAdministrationAdministration: Why isn’t everyone : Why isn’t everyone using using EMRsEMRs? Why isn’t it all happening ? Why isn’t it all happening faster?! Healthcare must provide better faster?! Healthcare must provide better qualityquality

Nothing New?Nothing New?

InformaticiansInformaticians have been tackling these have been tackling these same issues for decadessame issues for decadesFundamental misunderstandings about Fundamental misunderstandings about HIT standardsHIT standardsLack of commitment, resources / substrate Lack of commitment, resources / substrate to enrich themto enrich themRegenstrief motto: “It’s all about multiRegenstrief motto: “It’s all about multi--use standardized data”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 screen)chart, generate “Vanderbilt” ADHD 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 / Vocabulary (LOINC / SNOMED / RxNormRxNorm, etc), etc)–– Medical Logic (Arden Syntax, GLIF, etc)Medical Logic (Arden Syntax, GLIF, etc)

Emerging Consensus in Pediatric HITEmerging Consensus in Pediatric 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 standardsfunctional standardslag behind.. but no different than in most other lag behind.. but no different than in most other specialties, and will always be a “moving target”specialties, and will always be a “moving target”

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

Some Specific Examples of GapsSome Specific Examples of Gaps

Childhood growth and development Childhood growth and development (milestones, risk stratification, behavioral)(milestones, risk stratification, behavioral)Genetic / congenital disordersGenetic / congenital disordersWell care / anticipatory guidanceWell care / anticipatory guidancePediatric chronic diseases (Asthma, ADHD)Pediatric chronic diseases (Asthma, ADHD)Tons of “riskTons of “risk--based” screening topics (lead based” screening topics (lead exposure, iron deficiency, tuberculosis, exposure, iron deficiency, tuberculosis, etc)etc)

Current Content Development ProcessCurrent Content Development Process

Mostly anecdotal / specific needsMostly anecdotal / specific needs--basedbasedVoluntary / good will effortVoluntary / good will effortOften driven by nonOften driven by non--clinical stakeholdersclinical stakeholdersVery 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 standards of Where are the clinical standards of care documented?care 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 care.. the “quick install guides” of medical care.. –– abstractedabstracted–– often evidenceoften evidence--basedbased–– revised oftenrevised often–– development processes well establisheddevelopment processes well established

Who develops these documents?Who develops these documents?

American Academy of PediatricsAmerican Academy of PediatricsMany pediatric subspecialty groupsMany pediatric subspecialty groupsAmerican Academy of Family PracticeAmerican Academy of Family PracticeAHRQ / US Preventive Services Task ForceAHRQ / US Preventive Services Task ForceMany 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 defined:In one location, the following are 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 (hemoglobin, Clinical observations of interest (hemoglobin,

serum serum ferritinferritin, weight), weight)–– Decision logicDecision logic–– Task periodicityTask periodicityMore importantly, provide an important More importantly, provide an important developmental “starting point”developmental “starting point”

Problems with Current DocumentsProblems with Current Documents

Ambiguous (infants, illAmbiguous (infants, ill--appearing)appearing)Unclear decision logicUnclear decision logicCoarse directionCoarse directionOften 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 pediatric related documentation for a specific pediatric topictopic

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

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

statement statement --> highlight needed changes for new > highlight needed changes for new versionversion

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

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

2.2. Partnership for Policy Implementation (PPI)Partnership for Policy Implementation (PPI)–– AAP board recently approved a new program AAP board recently approved a new program --

revision and IT “revision and IT “operationalizationoperationalization” of AAP ” of AAP policy and guideline statementspolicy and guideline statements

–– Pediatric Pediatric InformaticiansInformaticians working alongside topic working alongside topic specialists.. 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 ExampleDevelopmental Screening Example

2001 Title: “Developmental Surveillance 2001 Title: “Developmental Surveillance and Screening of Infants and Young and Screening of Infants and Young Children”Children”2005 Title: “Identifying Children with 2005 Title: “Identifying Children with Developmental Disorders in the Medical Developmental Disorders in the Medical Home: An Algorithm for Early Childhood:Home: An Algorithm for Early Childhood:

AlgorithmAlgorithm--based Guidelinesbased Guidelines

Old vs. New: LogicOld vs. New: Logic

2001 Text: “Perform periodic screenings 2001 Text: “Perform periodic screenings of all infants and young children during of all infants and young children during preventive care visits”preventive care visits”2005, Current Draft: “Perform structured 2005, Current Draft: “Perform structured screening for children who appear normal screening for children who appear normal at the 9, 18, and 30at the 9, 18, and 30--month visits and month visits and targeted screening where surveillance targeted screening where surveillance activities identify any risk”activities identify any risk”

Old vs. New: VocabularyOld vs. New: Vocabulary

2001 Text: “Assess medical, genetic, and 2001 Text: “Assess medical, genetic, and environmental risk factors while taking environmental risk factors while taking routine medical, family, and social routine medical, family, and social histories”histories”2005, Old Draft: “Social and Demographic 2005, Old Draft: “Social and Demographic Risk factors, including high birth order, Risk factors, including high birth order, higher maternal age and male gender; low higher maternal age and male gender; low maternal education at the time of maternal education at the time of delivery” delivery”

Old vs. NewOld vs. New

2005, Current Draft: “Social and 2005, Current Draft: “Social and Demographic risk factors include being the Demographic risk factors include being the third or later child in a family, maternal third or later child in a family, maternal age greater than 29, and male gender age greater than 29, and male gender ((DrewsDrews et al, 1995); maternal education of et al, 1995); maternal education of less than or equal to 12 years at the time less 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 documented:Once the standards of care well 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 support Better opportunities to inform decision support

and reminder logicand reminder logic–– Quality improvement efforts now have sorely Quality improvement efforts now have sorely

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

possibilitiespossibilities

An Example: CHICAAn Example: CHICAReceives Receives PatientPatient--level level EHR info via EHR info via HL7HL7Logic Logic encoded in encoded in Arden Arden SyntaxSyntaxOCR / PaperOCR / Paper

SampleSampleScreening Screening

Form (PSF)Form (PSF)

SampleSamplePhysician Physician

Worksheet Worksheet FormForm

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.orgMy Phone: 317My Phone: 317--630630--70707070

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