MCHB Activities to Integrate Newborn Screening & Other Child Health
Information Systems

Deborah Linzer

Senior Public Health Analyst

U.S. Department of Health & Human Services

Health Resources & Services Administration

Maternal & Child Health Bureau

Division of Services for Children with Special Health Needs

Genetic Services Branch

Slide Presentation

Slide #1

Importance of Integrated Child Health Information Systems

-   Health & health services can be improved by assuring timely
    provision of accurate & comprehensive information.

-   Currently, information is often not timely & is usually fragmented.

Slide #2

Goal & Desired Outcome

-   Goal: To facilitate entry into the community based system of
    services needed by infants identified through NBS & their families.

-   Outcome: Improvement in the health & quality of life for newborns &
    children with or at risk for genetic disorders & their families.

Slide #3

Newborn Screening

-   Approximately 4 million infants are born yearly in the United States
    & are screened to detect conditions that threaten their life &
    long-term health.

-   Early detection, diagnosis, & treatment of these conditions may
    prevent a child's death, serious illness, or disability.

AAP, Newborn Screening Task Force. Pediatrics. 2000(Suppl);106:389-427

Slide #4

Newborn Screening System

-   Essential Components:

-   Initial screening

-   Immediate follow-up testing of screen-positive newborn

-   Diagnosis confirmation

-   Immediate & long-term care

-   Evaluation of all components of the system

Therrell, BL et al, *Screening*. 1992;1:135-147

Slide #5

Physician Awareness, Involvement, Interaction with NBS System

-   Survey respondents (n=574):

-   Physicians are generally satisfied with the NBS system's ability to
    retrieve screen-positive infants for follow-up testing.

-   Communication of screen results between the NBS program & the
    pediatrician is less than optimal.

-   31% - notification of screen-positive test results \>10 days.

-   26% - do not receive results of screen-negative tests.

-   28% - do not actively seek results of newborn screens, "no news is
    good news."

Desposito et al, *Pediatrics*. 2001;108:1-8

Slide #6

Task Force on Newborn Screening

-   Convened by American Academy of Pediatrics (AAP) at the request of
    MCHB, 1999

-   Co-sponsors:

-   National Institutes of Health (NIH)

-   Centers for Disease Control & Prevention (CDC)

-   Agency for Health Care Research & Quality (AHRQ)

-   Genetic Alliance

-   Association of State & Territorial Health Officials (ASTHO)

-   Association of Maternal & Child Health Programs (AMCHP)

-   Association of Public Health Laboratories (APHL)

AAP, Newborn Screening Task Force. *Pediatrics*. 2000(Suppl);106:389-427

Slide #7

Task Force on Newborn Screening Key Recommendations

-   Effective NBS systems require an adequate PH infrastructure & must
    be integrated with the health care delivery system.

-   PH agencies must involve health professionals, families, & the
    general public in the development, operation & oversight of NBS
    systems.

-   PH agencies must ensure adequate infrastructure & policies for
    surveillance & research related to NBS.

-   PH agencies should ensure adequate financing mechanisms to support a
    NBS program.

AAP, Newborn Screening Task Force. *Pediatrics*. 2000(Suppl);106:389-427

Slide #8

Evolution of a Child Health Profile

-   Integration of population-based & program specific newborn screening
    data with other child health information systems for:

-   Needs assessments

-   Personal health data access

-   Linkage of clinically useful data to optimize the delivery of care

-   Decision-making support for physicians at the time & point of
    service

-   Continuous quality improvement

Slide #9

MCHB Activities & Products

-   Title V supported Special Projects of Regional & National
    Significance

-   Genetic Services Branch (GSB)

-   Planning Grants to 22 States

-   Implementation Grants to 11 States

-   GSB/Office of Data Information & Management

-   Joint Program Initiative Grants to 5 States

-   Sourcebook for Planning & Development

-   A Tool for Assessment & Planning

-   Framework for Integrating Child Health Information Systems

-   Community of Practice

Slide #10

"The purpose of integrated information systems is to facilitate
assessment & prompt provision of appropriate services to ensure an
optimal healthy start for all children & improve the health of
children."

AKC/PHII. *JPHMP*, 2004: In press

Slide #11

Lessons Learned

-   Over-arching conclusions that governmental agencies should bear in
    mind when considering implementing health information systems
    integration projects:

-   Data are for sharing -- assets to share among programs

-   Communication is critical -- with all stakeholders

-   Change is hard -- change management strategies to mitigate this
    challenge increase the likelihood of success

-   Public health needs must drive technology -- project goals,
    objectives & functionality must be identified prior to searching for
    technology solutions

-   Stay the course -- adoption of new technology is slow, perseverance
    & patience should pay off

AKC/PHII, June 2003. Available at: http://www.phii.org/

Slide #12

Further Information

Deborah Linzer, MS

Senior Public Health Analyst

Health Resources & Services Administration

Maternal & Child Health Bureau

Division of Services for Children with Special Health Needs

Genetic Services Branch

Phone: 301.443.1080

E-mail: dlinzer@hrsa.gov