1. Health Resources and Services Administration Maternal and Child Health Bureau Health Resources and Services Administration Maternal and Child Health Bureau Integration of NBS with other MCH Systems: A Sourcebook & Tool for Assessment & Planning EHDI Conference February 2004 D eborah Linzer, MS

2. Health Resources and Services Administration Maternal and Child Health Bureau 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.

3. 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

4. “Improved coordination and integration of information systems is needed.” - Task Force for Newborn Screening, 2000

5. Health Resources and Services Administration Maternal and Child Health Bureau 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

6. Health Resources and Services Administration Maternal and Child Health Bureau 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

7. Health Resources and Services Administration Maternal and Child Health Bureau 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

8. Health Resources and Services Administration Maternal and Child Health Bureau 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

9. 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

10. Health Resources and Services Administration Maternal and Child Health Bureau Key Elements Leadership Governance Management Stakeholder Involvement Policy Support Organizational & Technical Strategies Technical Support & Coordination Financial Support & Management Evaluation

11. Health Resources and Services Administration Maternal and Child Health Bureau 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

12. Health Resources and Services Administration Maternal and Child Health Bureau Lessons Learned Data are for sharing Communication is critical Change is hard Let public health needs drive technology Stay the course

13. Health Resources and Services Administration Maternal and Child Health Bureau 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

14. Health Resources and Services Administration Maternal and Child Health Bureau 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

15. Health Resources and Services Administration Maternal and Child Health Bureau 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

16. 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

17. Questionnaire

19. Integration Planning Matrix

20. All Kids Count Public Health Informatics Institute The Sourcebook & Tool are available at www.phii.org

21. 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

22. Health Resources and Services Administration Maternal and Child Health Bureau Program Contact Deborah Linzer, MS Health Resources & Services Administration Maternal & Child Health Bureau 301-443-1080 dlinzer@hrsa.gov http://mchb.hrsa.gov/

23. Newborn Screening Improves & Saves Lives