Newborn Screening and Integrated Information Systems

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Newborn Screening and Integrated Information
Systems

• Nan Streeter
• MCHB Partnership Meeting
• October 18, 2005

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Wouldnt it be a good thing if health care
providers and public health officials had
complete information about an individual child so
that they can support the processes that can lead
to ?coordinated care ?appropriate referrals
and follow-up ?non-duplication of services?
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CHARM Vision

• CHARM will be the information resource of choice
  for public health programs and health care
  providers!
• facilitate coordination of services
• improve child safety
• improve health outcomes

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CHARM

• Child
• Health
• Advanced
• Records
• Management

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Child Health Profile

• Demographic information
• Medical information
•  Contact information
•  Follow-up information
• Current and underlying diagnoses

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Components of CHARM

• Vital Records
• Utah State Immunization Information System
  (USIIS)
• Newborn Hearing Screening (EHDI)

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Pending Programs (this year)

• Newborn Screening (bloodspot)
• Early Intervention
• Birth Defects Network
• Web access
• Medical Home Portal Website

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Future Additions

• WIC
• EPSDT
• CSHCN Clinics
• Medicaid
• Lead Screening

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(No Transcript)
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into the Medical Home
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CHARM

• Developed by the Utah Department of Health
• CHARM will provide immediate access to
  information from several specific program
  databases to track and monitor child health
  status, such as screening results, immunization
  status, referrals, follow-up, assessment,
  treatment and outcomes for children and their
  families
• It will grow to include all children 0-21 years
  of age

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CHARM

• CHARM will not replace existing UDOH databases
• It will be the "brain" of the integrated data
  system
• Electronic broker, dispatcher, traffic cop,
  conflict manager, and integration policy enforcer
  
• Participating programs will be fitted with their
  own front-end "agent to plug in to the CHARM
  infrastructure.
• CHARM is taking a modular approach to integrating
  systems, beginning with a core of programs and
  leveraging funding and incremental successes to
  achieve a long-term vision for a statewide
  integrated system.

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Immediate Benefits

• Locating infants missed in screenings
• Identifying infants lost to follow-up
• NOT contacting families whose babies have died

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Benefits of CHARM

• Provides immediate access to information stored
  in specific program databases to track and
  monitor health status and services for children
• Health care providers and programs can be alerted
  about a childs health care needs and assist with
  timely appropriate follow-up and treatment
• Saves time health providers no longer need to
  track down a childs health information from
  multiple sources

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Additional Benefits

• Improves coordinated services to children and
  families
• Ensures the timely sharing of critical data
• Reduces the fragmentation of data and health care
  services
• Increases accountability

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Additional Benefits

• Advances health care providers knowledge about
  children with health, developmental, and genetic
  conditions
• Enables public health officials to make better
  public health policy decisions

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Additional Benefits

• Ensures the security and confidentiality of
  medical information
• Only authorized and authenticated public health
  and health care providers will be able to access
  a childs health information.

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Funding Sources

• Much of the data integration effort of CHARM is
  funded through Cooperative Agreements
• EHDI (CDC)
• SSDI (HRSA)
• GSDI (HRSA)
• All Kids Count / RWJ / Public Health Informatics
  Inst.
• (Initial development funds)
• Title V funding
• Other grant opportunities being sought

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CHARM

• Contact information for more details on CHARM
• Richard Harward
• rharward_at_utah.gov
• 801-584-8529

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New Funding Opportunity

• From the Association of University Centers on
  Disabilities USU - LEND Grant
• Birth Certificate Orders A Missed Opportunity
  for Hearing Screening Follow-up
• 25 to 30 of infants referred for follow-up are
  no-show
• High percentage of parents apply for birth
  certificate first year
• Linkage of state data bases through CHARM (Child
  Health Advanced Records Management)
• Create Alert system for children needing follow
  up
• Letter, on-line, in-person

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NCHARM The Beginnings of CHARM

• NCHARM Newborn CHARM
• UDOH began use of a common numeric identifier for
  the three legally mandated datasets for babies
  born in Utah
• birth certificates
• newborn dried bloodspot screening
• newborn hearing screening
• This identifier, based on the bloodspot kit
  number, is referred to as the Birth Record Number
  (BRN)

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NCHARM The Beginnings of CHARM

• The BRN is printed onto piggyback labels that are
  placed on the back of the newborn blood screening
  kit.
• The BRN is entered into the Electronic Birth
  Certificate and HITRACK (hearing screening)
  databases.