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Integrating Child Health Information Systems

Integrating Child Health Information Systems. Alan R. Hinman, MD, MPH All Kids Count February 19, 2004. Outline of presentation. Why do we need integrated child health information systems (CHIS)? Background on AKC and GSB/HRSA Integration Sourcebook

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Integrating Child Health Information Systems

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  1. Integrating Child Health Information Systems Alan R. Hinman, MD, MPH All Kids Count February 19, 2004

  2. Outline of presentation • Why do we need integrated child health information systems (CHIS)? • Background on AKC and GSB/HRSA • Integration Sourcebook • Principles and core functions of integrated CHIS • Current status of integration of CHIS • December 2003 Conference on Developing Child Health Information Systems to Meet Medical Care and Public Health Needs

  3. Newborns screened for hyperphenylalaninemia – 1999-1 No. screened 4,024,850 No. NOT NORMAL 3,494 No. NOT NORMAL lost to f-u 154 No. Classical PKU or clinically significant variant 302

  4. Newborns screened for hyperphenylalaninemia – 1999-2 3,494 NOT NORMAL – 154 lost to f-u = 3,340 NOT NORMAL with f-u -> 302 classical PKU or sig. Variant 3,340/302 = 11 f-u/case 154 NOT NORMAL lost to f-u/11 = 14 missed cases??

  5. Days from birth to initiation of Rx - Classical PKU DaysNo. 0 - 7 38 8 - 14 87 15 – 21 30 >21 14 Unknown 18 NR 12 Source: NNSR - 1999

  6. Newborns screened for hypothyroidism – 1999 - 1 No. screened 4,024,850 No. NOT NORMAL 52,217 No. NOT NORMAL lost to f-u 1,371 No. confirmed 1o hypothyroidism 1,550

  7. Newborns screened for hypothyroidism – 1999 - 2 52,217 NOT NORMAL–1,371 lost to f-u= 50,846 NOT NORMAL with f-u -> 1,550 1o hypothyroidism = 50,846/1,550 = 1 case/32.8 f-u 1,371 NOT NORMAL lost to f-u/32.8 = 42 missed cases??

  8. Days from birth to initiation of Rx - 1o hypothyroidism DaysNo. 0 - 7 218 8 – 14 455 15 – 21 143 >21 225 Unknown 492

  9. Barriers to gaining access to newborn screening results – Desposito et al • Infants born in hospital where physician does not have privileges • New transfers to the practice • Infants born in other states • Personnel time to track results • Parents notified before Primary Care Pediatrician • Name change • Absence of direct communication system linking state newborn screening program to Primary Care Pediatrician

  10. Average time for notification of initial screen-positive result – Desposito et al Days% 1 - 3 12.5 4 - 7 33.1 8 – 10 16.2 11 – 14 14.5 15 – 21 9.4 > 22 4.4 Not 4.5 ? 5.4

  11. Average time for notification of screen-negative result – Desposito et al Days% 1 - 7 4 8 – 14 19 15 - 21 22 22 – 28 13 >28 16 Not 26

  12. Conclusions/recommendationsDesposito et al - 1 “All initial screening test results, for infants cared for from birth, need to be communicated to the pediatrician: 7 days for screen-positive results and 10-14 days for all results. Newborn screening test results of new patients who enter the practice should be available at the time of the first well-infant visit, ideally by 2 weeks of age.”

  13. Conclusions/recommendationsDesposito et al - 2 “Augmented communication systems (including electronic systems) are needed to interface the primary care pediatrician directly with the state newborn screening system to enhance timely retrieval of screen-positive newborns, to gain access to follow-up test results, and to provide documentation for all test results, both positive and negative.” Source: Pediatrics 2001;108:e22

  14. “Putting newborns at risk” “The science of screening moves faster than the bureaucracy that manages it. A recent state audit found Georgia can’t tell whether all newborns are screened, as required, or whether each infant who tests positively receives the needed follow-up care in a timely manner….in 2001, 38 babies who tested positive for sickle cell disease were not referred for follow-up care.” Source: Miller & Guthrie, AJC, 2/2/03

  15. Greensboro NC Newborn Hearing Screening, 1998-1999 • 175 / 5010 (3.5%) of non-ICU newborns had abnormal screens • 157 / 175 (89.7%) of abnormal screens had follow-up (18 did not) • 9 confirmed hearing loss • Ratio of positives to confirmed hearing loss = 17 • ?did any of 18 not f-u have hearing loss? Source: Pediatrics 2000;106:e7

  16. Why Worry About Immunizations? • 4 million births/year (11,000/day) • New vaccines keep being added • Population mobility • Changes in providers/plans • Unnecessary (duplicate) immunization • Few providers use reminder/recall • Parents and providers overestimate coverage

  17. Demonstrated usefulness of immunization registries • Sending reminder/recall notices to children • Generating official immunization records • Assessing immunization levels (HEDIS) • Reducing missed opportunities • Preventing unnecessary immunization • Recall for re-vaccination • Vaccine inventory management

  18. Impact of immunization registryin an HMO - 1 • HealthPartners, Minneapolis • Compared coverage in 2-year-olds in staff model HMO with registry and affiliated clinics without registry Source: Nordin J, Carlson R 1999 AKC Conference

  19. Impact of immunization registryin an HMO - 2 4-3-1-1 4-3-1-1-2 1996 1997 1996 1997 Staff 88.2% 95.7% 60.6% 87.8% Affiliates 85.1% 83.9% 70.2% 73.7%

  20. Registry use inSan Bernardino County • Implementation of the registry led to a decline in average age of MMR from 20 months in 1994 to 13 months in 1999. • Children are now being protected 7 months earlier than before the registry went into operation.

  21. Current Immunization Profile for 19-35 Month Old Children by County for 4:3:1:3:3, Based on MCIR Data

  22. MCIR 4:3:1:3:3 Immunization Rates by MI Region Region 5 Region 6 Region 2 Region 4 Region 3 State Region 1       Jan 01 Jul 01 Jan 02 Jul 02 Jan 03 Jul 03

  23. Goal of integrated CHIS • To provide all appropriate information to patients/families, providers, and programs • Complete, accurate & timely information leading to improved service delivery and health outcomes for children

  24. Linkage & Integration • ?linkage - modifying existing information systems to exchange information • ?integration - comprehensive systems built with, perhaps, individual components • Integration - providing a range of information to the end user in a simple yet comprehensive format so he/she can readily take all appropriate actions • Integration does not imply a specific technical model • Integration relates to the end user, not to the background machinery

  25. Letter from CDC & HRSA Dir/Admin to State Health Officers, April 1, 1998 “As a matter of public health policy, ASTHO, NACCHO, CDC, and HRSA endorse the use of CDC and HRSA categorical health grant funds to support the development of integrated health information systems. Such integration will benefit categorical health programs and also address cross-cutting public health information needs.”

  26. All Kids Count background • Funded by The Robert Wood Johnson Foundation ~ $30 million over 12 years • Phase 1 (1992-1997) 24 planning and early implementation grants to develop immunization registries • Phase 2 (1998-2000) 16 implementation grants to advance immunization registries to fully operational status • Phase 3 (2000-2004) to promote the development of integrated preventive health information systems for children • Public Health Informatics Institute established in 2001 with RWJF funding—AKC now part of PHII

  27. Our approach As a non-profit, non-governmental organization we… • Act as a neutral convener of stakeholders in public and private sectors • Provide a field-oriented perspective to issues facing public health practitioners • Use a collaborative, participatory approach to problem solving • Stimulate new ideas and innovative solutions—challenge the status quo • Advocate/educate partners on key issues and solutions

  28. All Kids Count III goals Two primary goals: • To develop an action agenda for integrated child health information systems (CHIS) • To develop resources and tools to assist public health agencies in development of integrated CHIS

  29. GSB/MCHB Grants since 1998 Purpose to facilitate: • the development of integrated child health information systems to include newborn screening systems • the opportunity to improve service delivery to children and their families that is community-based, culturally competent, comprehensive • the enhancement of the ability to coordinate care across multiple programs and providers

  30. Child Health Profiles - 1 • Goal – to provide up-to-date information about children’s health status to families, health care providers, and public health programs, thereby facilitating appropriate care • Authorized users can determine at a glance child’s status with respect to all components • Individual programs can assess information about child’s status with respect to other programs

  31. Child Health Profiles - 2 Start with 4 programmatic areas: • Newborn dried blood spot (NDBS) screening • Early hearing detection and intervention (EHDI) • Immunizations • Vital registration

  32. Child Health Profiles - 3 4 areas chosen share characteristics: • Recommended for all infants/children • Carried out/begin in newborn period • Time-sensitive • Primarily delivered in private sector but have strong public sector component • Mandated in most/all states

  33. Integration of Newborn Screening and Genetic Service Systems with Other MCH Systems A Sourcebook for Planning and Development Prepared by All Kids Count Public Health Informatics Institute 2002

  34. Key Elements for Success • Leadership • Project governance • Project management • Stakeholder involvement • Organization and technical strategy • Technical support and coordination • Financial support and management • Policy support • Evaluation

  35. Lessons Learned • Data are for sharing • Listen up • Change is hard • Let public health program needs drive technology • Stay the course Source: Sourcebook

  36. Core Workgroup MeetingMay 8-9, 2003 • Goal – Develop a draft Model of Practice (Framework) for integrating newborn screening systems with other related early child health information systems that includes a comprehensive set of core functions, activities and services • Objective – To gain agreement on the format of the Model of Practice and draft core functions

  37. Core Workgroup MeetingParticipants - 1 • Delton Atkinson, NCHS • Tonya Diehn, IA • John Eichwald, UT • Jennifer Heberer, ME • Therese Hoyle, MI • Pam King, OK • Robert Cossack, MA • Donna Williams, NNSGRC • Amy Zimmerman, RI

  38. GSB/MCHB/HRSA Deborah Linzer Michele Lloyd-Puryear Marie Mann AKC/PHII Sherry Bolden Nicole Fehrenbach Alan Hinman Janet Kelly David Ross Kristin Saarlas Core Workgroup MeetingParticipants - 2

  39. Core Workgroup Meeting - 1 • Framework for Integrating Child Health Information Systems • Set of activities/functions to achieve desired outcome – improving health of all children • Focus on integration of selected program information systems • Builds on approved practices and standards • Provides minimum set of core functions • Is not a technical model

  40. Core Workgroup Meeting - 2 • Reviewed existing programmatic standards/guidelines/recommendations • Reviewed existing functional standards (immunization registries) • Compared 12 registry core functions to immunization standards to see if they will meet the standards (yes)

  41. Core Workgroup Meeting - 3 • Reviewed standards/guidelines/recommendations for other programs and discussed how registry core functions would have to be modified/expanded to meet them • Developed (with subsequent comments) 19 principles, 22 core functions and 8 desirable functions

  42. Core Workgroup Meeting – 4 • Reviewed service flow and data flow diagrams of different programs to detect commonalities • Developed (with subsequent comments) combined data flow diagram

  43. Current data exchange between information user and individual public health programs

  44. Future data exchange between information user and integrated information system

  45. Subsequent steps • Review by external review committee • Further modification • Submission to GSB/MCHB • Presentation to grantees

  46. Points to keep in mind • Principles/functions refer to integrated systems – individual program systems may have additional functionality • Do not speak to • System architecture • Data elements • Software • Address what the functions are, not how they are to be achieved

  47. Principles and Core Functions of Integrated Child Health Information Systems

  48. Principles underlying integrated child health information systems • Purpose – 1 • Security & confidentiality – 5 • Technology serving stakeholder needs– 8 • Quality assurance & evaluation – 3 • Financing – 2 • Total – 19

  49. Core Functions of Integrated Child Health Information Systems • Confidentiality & security – 5 • Establishing & maintaining client records – 4 • Service functionality – 6 • Technical functionality – 4 • Reports – 3 • Total – 22

  50. Desirable functions of integrated child health information systems • Establishing & maintaining client records – 3 • Service functionality – 2 • Technical functionality – 1 • Reports – 2 • Total – 8

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