KEYWORDS:
Community Systems Integration, Information System Integration, Newborn Screening, Program Integration, State Health Agencies
BACKGROUND:
HRSA has worked to strengthen “state” newborn screening systems by providing support to 25 state public health programs to integrate newborn screening (NBS) program activities, including information and service systems through public-private, federal-state, and intrastate partnerships to ensure that infants identified by NBS receive follow-up and referral to community services. HRSA’s goal is to enhance service delivery and provision of care for newborns with or at risk for genetic disorders to improve their health and quality of life.
OBJECTIVE:
1. To improve linkages between NBS systems and the state system of care for children with special health needs.
2. To develop a unified record on every child by integrating related child health information systems.
METHOD:
HRSA awarded funding to 16 states to improve coordination between NBS programs and state and community systems of care; and, 22 states for planning activities to strengthen NBS and genetic service programs.
RESULT:
The development of new public-private partnerships; integration of a wide range of public health and private health care, enabling and direct health care services; development of an effective information infrastructure; balance between accountability and consumer demands; control of costs; assurance of medical privacy; and ability to measure performance.
CONCLUSION:
It is expected that the quality of life of infants identified through NBS will improve and cost savings will result when coordination among NBS and related programs can assure that these infants are linked to medical homes.
LEARNING OBJECTIVES:
1. Each year 4 million infants born in the US are screened shortly after birth to detect congenital conditions.
2. NBS screening programs incur costs from duplication of information collection and fragmentation of services.
3. Improved coordination and integration of public health programs and their information systems is needed.
Web Page: genes-r-us.uthscsa.edu
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