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

Pediatric HIT Standards: Where are we, where we can go, and how we’re working to get there. Paul Biondich, MD, MS Regenstrief Institute, Inc. Children’s Health Services Research. Tons of Press and Excitement. Early 2004: paradigm shift in HIT discussion National HIT Coordinator / Czar

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

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  1. Pediatric HIT Standards: Where are we, where we can go, and how we’re working to get there. Paul Biondich, MD, MS Regenstrief Institute, Inc. Children’s Health Services Research

  2. Tons of Press and Excitement.. • Early 2004: paradigm shift in HIT discussion • National HIT Coordinator / Czar • Presidential and Bi-partisan political attention / support • Early hint of grant $ • Attention of payors • Health IT: something I no longer have to be embarrassed to talk about at clinic! • Medical Informaticians: in very high demand

  3. .. But Lack of Progress / Unhappiness • Practitioners: EMRs don’t meet my needs, data isn’t reusable like I thought it’d be.. “empty shell syndrome” • Vendors / Developers: No clear message as to what pediatrics wants, standards aren’t fully “baked” yet.. we need consistent guidance • Administration: Why isn’t everyone using EMRs? Why isn’t it all happening faster?! Healthcare must provide better quality

  4. Nothing New? • Informaticians have been tackling these same issues for decades • Fundamental misunderstandings about HIT standards • Lack of commitment, resources / substrate to enrich them • Regenstrief motto: “It’s all about multi-use standardized data”

  5. Basic Introductory Definitions • Functional Standards: how we want computer applications to behave for the end user (calculate BMI, plot growth chart, generate “Vanderbilt” ADHD screen) • Technical Standards: how a computer understands, stores, and communicates information to other computers • Messaging / Communication (HL7) • Vocabulary (LOINC / SNOMED / RxNorm, etc) • Medical Logic (Arden Syntax, GLIF, etc)

  6. Emerging Consensus in Pediatric HIT • Advocacy for child HIT should get away from convincing public that pediatric IT needs are somehow “different” • Of course, pediatric EHR functional standards lag behind.. but no different than in most other specialties, and will always be a “moving target” • Existing/agreed upon technical standards are established and will work today for kids, but they most often lack pediatric content specificity

  7. Some Specific Examples of Gaps • Childhood growth and development (milestones, risk stratification, behavioral) • Genetic / congenital disorders • Well care / anticipatory guidance • Pediatric chronic diseases (Asthma, ADHD) • Tons of “risk-based” screening topics (lead exposure, iron deficiency, tuberculosis, etc)

  8. Current Content Development Process • Mostly anecdotal / specific needs-based • Voluntary / good will effort • Often driven by non-clinical stakeholders • Very little specialty organization involvement • Ironic given the importance of vocabularies / concept dictionaries!

  9. Where are the clinical standards of care documented? • Textbooks, research literature – overwhelming! (Barnett) • Clinical Guidelines / Policy Statements – the “quick install guides” of medical care.. • abstracted • often evidence-based • revised often • development processes well established

  10. Who develops these documents? • American Academy of Pediatrics • Many pediatric subspecialty groups • American Academy of Family Practice • AHRQ / US Preventive Services Task Force • Many others.. clearinghouse group aggregates these documents

  11. A substrate for vocabulary and communication standards? • In one location, the following are defined: • Pertinent historical questions (cow’s milk before a year of age?) • Clinical observations of interest (hemoglobin, serum ferritin, weight) • Decision logic • Task periodicity • More importantly, provide an important developmental “starting point”

  12. Problems with Current Documents • Ambiguous (infants, ill-appearing) • Unclear decision logic • Coarse direction • Often incomplete (don’t complete the thought loop)

  13. Help is on the way.. • PDSW Technical Expert Panel • Goal: creation of technical standards and related documentation for a specific pediatric topic • Chosen topic: Asthma care • Partnership underway with the NHLBI’s upcoming Asthma guideline • Attempts to create vocabularies from current statement -> highlight needed changes for new version • Will submit related vocabularies to LOINC / SNOMED, or map when already exist

  14. Help is on the way.. • Partnership for Policy Implementation (PPI) • AAP board recently approved a new program - revision and IT “operationalization” of AAP policy and guideline statements • Pediatric Informaticians working alongside topic specialists.. • Algorithms and the granular concepts that “drive” them • Ultimate future: vocabularies / medical logic published alongside statements

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

  16. Algorithm-based Guidelines

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

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

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

  20. Our future plans.. • Once the standards of care well documented: • Vocabulary can be built / mapped • Vocabularies built into systems • Data aggregation can happen across care settings • Better opportunities to inform decision support and reminder logic • Quality improvement efforts now have sorely need measurement metrics • Infinite prospective and retrospective research possibilities

  21. An Example: CHICA • Receives Patient-level EHR info via HL7 • Logic encoded in Arden Syntax • OCR / Paper

  22. SampleScreening Form (PSF)

  23. SamplePhysician Worksheet Form

  24. Vital Sign Calculations Screening Form (PSF) Doctor’s Worksheet (PWS)

  25. Physician PreventiveCare Reminders

  26. Identifying Risk Factors Screening Form (PSF) Physician Form Reminder

  27. Questions / Curious? • My Email: pbiondich@regenstrief.org • My Phone: 317-630-7070 • PPI @ AAP: hnoteboom@aap.org • TEP @ CDSW: dettel@hsc.usf.edu

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