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Child Health Advanced Record Management (CHARM): A Utah Effort at Integrating Data Systems:

George Delavan, M.D. - Director Division of Community and Family Health Services Utah Department of Health. Child Health Advanced Record Management (CHARM): A Utah Effort at Integrating Data Systems:. Maternal and Child Health Bureau Internet Webcast April 27, 2001.

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Child Health Advanced Record Management (CHARM): A Utah Effort at Integrating Data Systems:

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  1. George Delavan, M.D. - Director Division of Community and Family Health Services Utah Department of Health Child Health Advanced Record Management (CHARM):A Utah Effort at Integrating Data Systems: Maternal and Child Health Bureau Internet Webcast April 27, 2001

  2. The Utah Department of Health • has established a Mission: • to coordinate the development of a health Information System (IS) that will allow customers and staff seeking information to obtain the necessary information they need, regardless of where it is collected.

  3. The Utah Department of Health • IS Vision: • 1) public health data are complete, uniform and accurate; • 2) stakeholders are satisfied with the availability and usefulness of public health data; and • 3) public health data are entered only once, and are readily retrievable by all authorized people.

  4. UDOH Information Systems • FINET (Financial) • Human Resource Management (Personnel) • Data Warehousing • Indicator Based Information System (IBIS) • Child Health - examples include: • Utah State Immunization Information System (USIIS) • Child Health Advanced Record Management (CHARM)

  5. Child Health Advanced Record Management (CHARM) • The short term goal of CHARM is to link newborn hearing screening records, newborn metabolic screening records, and birth records for children born in Utah. • The long-term goal of CHARM is to integrate birth cohort related databases with early intervention, immunization information system, and then expanding to more child health related databases

  6. EI VR IMM NMS NHS BDR WIC HCF

  7. The CHARM Information System • Administrative Management • Maintain user profiles • Assign user access authority • Retain an audit trail • Record Management • Assign unique individual identifiers • Identify and merge duplicate records • Each participating database will need to store this identifier • Perform Information Routines • Immunization status • Screening records • Demographic updates • Enrollment / Eligibility Status

  8. Some CHARM Benefits • Potentially reduce redundant data collection efforts and improve integration of services • information that is reliably gathered by one health program can be shared by other heath programs rather than being collected multiple times • Monitor Programs activities • improve Program follow-up efforts with children and their families • Identify infants missed in screening • Identify infants lost to follow-up

  9. Some CHARM Benefits • Create a rich data set for measuring and monitoring children’s health outcome • Identify health access barriers • Identify health disparities • Potentially a significant resource for basic research • Improve health care for children and their families

  10. CHARM Pilot Project The Problem: How do we uniquely identify newborn babies in three newborn databases? The primary goal of the Pilot Project was to find out if one number could be used to uniquely identify newborns.

  11. Proposed Solution Since the process to order and manufacture the uniquely numbered heelstick kits occurs at least six months prior to the births in any calendar year, it was decided to see if this number could be used to uniquely identify newborns in the other two data systems.

  12. Pilot Description Two pilot hospitals selected Salt Lake Regional Hospital large urban (1,667 births/year*) Brigham City Community Hospital smaller rural (515 births/year*) *1998 Vital Statistics

  13. Pilot Description Created new “Birth Record Number” field within Hearing Screening and Birth Certificate databases Pilot Timeframe: July 1 through September 30, 2000

  14. Pilot Description Identified a series of 1,000 sequential numbered heelstick kits Designed a label sheet for the dissemination of the heelstick number Identified funding for printing costs Printed 1,000 label sheets with six (6) peel-off pre-numbered and bar coded ID labels and instructions

  15. CHARM Pilot Results 597 Heelstick Screens 594 BRN (99.5%) 598 Birth Certificates 594 BRN (99.3%) 597 Hearing Screens 592 BRN (99.2%) Birth Record Number (BRN) propagation results

  16. CHARM Pilot Results • Reasons why Birth Record Number (BRN) did not match between databases: • infant death • transferred to another facility • invalid BRN • duplicate BRN • different BRN between databases • missing BRN

  17. CHARM Pilot Results Linked Records = 591 (99.5%) 594 Birth Certificates 594 Heelstick Screens Linked Records = 585 (98.8%) Linked Records = 585 (98.8%) 592 Hearing Screens

  18. CHARM Pilot Results Heelstick Screens Birth Certificates Linked Records = 583 (97.5%) Hearing Screens (598 Births)

  19. Pilot Description The Pilot Project was funded in part by the Maternal and Child Health Bureau (MCHB) under the State Systems Development Initiative (SSDI) grant

  20. Maternal and Child Health State Genetics Planning Grants FY 2000 (10) FY 1999 (7) develop state genetics plans, to include programs in newborn screening and other early identification and prevention measures

  21. Maternal and Child Health State Genetics Planning Grant The goal of this two year grant is to create a plan for statewide genetic services and data integration that will be complete and ready for implementation The activities to be pursued with funds from this grant include: • Family and Program Needs Assessment for child health data integration (Year One) • State Plan developed for implementing the coordination and integration of the data (Year Two)

  22. Centers for Disease Control and Prevention Early Hearing Detection and Intervention Level I (13) Level II (2) assist with developing EHDI tracking and data management systems

  23. Centers for Disease Control and Prevention Early Hearing Detection and Intervention The goal of this five year grant is to improve the timeliness and appropriateness of Early Hearing Detection and Intervention (EHDI) services to infants and their families The activities to be pursued with funds from this grant include • integrating the EHDI surveillance and tracking system with other relevant public health information databases and service systems • Level II activities: • Cost Analysis (USU) / Genetics (UUMC)

  24. The End Product? CHARM DW IBIS

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