Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Health Resources and Services Administration

Maternal and Child Health Bureau

Integration of NBS with other MCH Systems: A Sourcebook & Tool for Assessment & Planning

EHDI ConferenceFebruary 2004

Deborah Linzer, MS

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Child Health Profile

Goal is to develop a unified record on every child to: capture accurate information in a timely manner support decision-making at the point of service support program needs

Integrating information systems so that the information user has access to complete & accurate information about a child, it is anticipated that child health can be improved.

Newborn Screening

Task Force Report Vol. 106, Aug. 2000,

Suppl. Approved by:

AAP Board of Directors AAP Committee on

Genetics AAP Committee on

Fetus & Newborn Medical Home

Initiatives for Children with Special Needs - Project Advisory Committee

AAP Task Force on Newborn & Infant Hearing

“Improved coordination and integration of information systems is needed.”

- Task Force for Newborn Screening, 2000

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

State Planning Grants

Integration of NBS programs with other points of early identification of children born with heritable & congenital conditions

Integration points of early identification with systems of early intervention

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

State Planning Grants

Retrieval of NBS information by medical home

Public health agencies collaborating Public health agencies & private

sector collaborating Community-based child health

profile

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Partnership

MCHB PHII/All Kids Count Describe States demonstrating best

practices in the integration of newborn blood spot screening programs with other public health programs & their information systems

newborn dried blood spot screening early hearing detection & intervention immunizations vital registration

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Methodology

Reviewed 1999, 2000 SPRANS grant applications (n=17)

Selected 7 as representative of broad vision & strong approach(CO, IA, MI, MO, OR, RI, UT)

Interview protocol derived from MIS literature & experience on critical success factors

Conducted 2-day site visits Synthesized discussions & common themes

Integration Sourcebook

Partnership HRSA/MCHB PHII/All Kids Count

Target: State Public Health

Teams Focus

Nine Key Elements Best Practices Two Case Studies Lessons Learned

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Key Elements

Leadership Governance Management Stakeholder

Involvement Policy Support

Organizational & Technical Strategies

Technical Support & Coordination

Financial Support & Management

Evaluation

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Case Studies

Mature Project Captures the elements that made them

successful Discusses how they put best practices into

action Summarizes their organizational, personal

talents, and systems strategies Emerging Project

Summarizes how best practices can influence their success

Discusses their goals and strategies

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Lessons Learned

Data are for sharing Communication is critical Change is hard Let public health needs drive

technology Stay the course

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Tool for Assessment & Planning

To help Program Managers Characterize a strategic vision Assess organizational readiness Determine where you stand in the

project life cycle Question data integration needs and

strategies

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Approach

Best used in early stages Focused on planning and

accountability Integrated into team’s project

management strategy Used to seek input from key

stakeholders that affect the project’s planning and early implementation stages

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Organization Questionnaire

Nine key elements Based on information systems literature Best practices demonstrated by State &

local governments

Integration Planning Matrix Sample table to assist public health

teams Future goals Strategies Dedicated staff

Tool for Assessment & Planning Partnership

HRSA/MCHB PHII/All Kids Count

Target State Public Health

Teams Companion to

Integration Sourcebook Focus on

Understanding Best practices Organizational readiness Additional strategies Accomplishments &

action steps

Questionnaire

Questionnaire

Integration Planning Matrix

All Kids CountPublic Health Informatics

Institute

The Sourcebook & Tool are available at www.phii.org

National Newborn Screening & Genetics Resource Center

Information on MCHB’s Initiative to Integrate Newborn Screening

Systems is available at:http://genes-r-us.uthscsa.edu

Hea

lth

Res

ou

rces

an

d S

ervi

ces

Ad

min

istr

atio

n

Mat

ern

al a

nd

Ch

ild

Hea

lth

Bu

reau

Program Contact

Deborah Linzer, MS Health Resources & Services AdministrationMaternal & Child Health Bureau

301-443-1080dlinzer@hrsa.gov

http://mchb.hrsa.gov/

Newborn Screening Improves & Saves Lives