INTEGRATED DATA SYSTEMS: WHAT HAPPENS NEXT? RHODE ISLAND’S EXPERIENCE

1. AMCHP 2005 Conference INTEGRATED DATA SYSTEMS:WHAT HAPPENS NEXT?RHODE ISLAND’S EXPERIENCE Samara Viner-Brown February 20, 2005

2. KIDSNET KIDSNET OUTLINE • Overview of KIDSNET • Opportunities • Data Utilization • program linkages • medical home • birth defects surveillance • longitudinal studies • Future Analyses • Tools/Best Practices

3. KIDSNET KIDSNET KIDSNET OVERVIEW Goal: Assure all RI children receive public health preventive services

4. KIDSNET AFFILIATED PROGRAMS KIDSNET KIDSNET • 6 Universal: • Newborn Developmental Risk* • Newborn Bloodspot Screening • Newborn Hearing Assessment • Immunization* • Childhood Lead Poisoning • Vital Records • *Fully integrated databases • 4 Targeted: • WIC • Early Intervention • Family Outreach (Home Visiting)* • Birth Defects

5. Vital Records and Newborn Developmental Risk Assessment Newborn Blood Spot KIDSNET Home Visiting Lead Prevention Pediatric Providers Early Intervention Rhode Island Department of Health Rhode Island Hearing Assessment Program WIC: Special Supplemental Nutrition Program for Women, Infants and Children Birth Defects Immunizations Head Start School Nurses

6. SYSTEM FEATURES AND DESIGN KIDSNET KIDSNET • Includes all RI births from January 1, 1997 (~80% have immunization data) • Originally, dial in access by users--now web-based • Only immunization data come directly from providers • Follow-up and QA components

7. KIDSNET USERS KIDSNET KIDSNET • Current: • Health department staff (KIDSNET affiliated programs) • Primary care providers (~75% sites) • Contracted Agencies (Home Visiting, WIC) • Head Start Agencies • Lead Centers • School Nurse Teachers • Planned: • Audiologists • Managed Care Organizations • Community-Based Organizations

8. KIDSNET KIDSNET KIDSNET FUNCTIONS • Links health and service care providers to Department of Health • Facilitates sharing of information between authorized users providing services • Promotes comprehensive contacts with families

9. KIDSNET KIDSNET OPPORTUNITIES

10. INTEGRATION: BENEFITS AND OPPORTUNITIES KIDSNET KIDSNET • Service/Program Coordination • Multiple programs tracking the same child; avoids redundant information collection and redundant services • Program Linkages • Birth defects surveillance; hearing loss referrals to EI; impact of home visiting on program enrollment; etc. • Medical Home Measurement • Research • e.g., impact of mobility on health and educational outcomes • Data Quality • compare to multiple data sources (hospital discharge, newborn screening, vital records, medical records) • Needs Assessment

11. KIDSNET KIDSNET DATA UTILIZATIONOh, the possibilities!

12. KIDSNET KIDSNET DATA UTILIZATION:PROGRAM LINKAGES/ANALYSES • Are children who received home visits more likely to be enrolled in Early Intervention, WIC, etc; be up to date on preventive care; or have a medical home? • Differences in continuity of care and program participation (e.g., preventive services, Early intervention) by neighborhood provider type, language, race/ethnicity.

13. KIDSNET KIDSNET DATA UTILIZATION:PROGRAM LINKAGES/ANALYSES(continued) • Compare quality and completeness of care based on birth order • Impact of risk factors on completeness of care • Impact of WIC, home visiting and EI on mobility and completeness of care • Does residence/distance from provider impact access and completeness of care? • Are there certain providers who have a higher percentage of children that are not completely immunized?

14. KIDSNET KIDSNET DATA UTILIZATION:MEASURING MEDICAL HOME • Preventive services (immunization and lead screening on schedule by demographics (language, race/ethnicity); EI enrollment (Accessible) • Preventive services from same provider (e.g., DPT3 and 2nd HepB) (Continuous) • Number of providers for preventive services by the time child is aged 6 (Continuous)

15. KIDSNET KIDSNET DATA UTILIZATION:MEASURING MEDICAL HOME (continued) • Children entering school without complete immunizations (Continuous) • Children receiving complete newborn screenings; immunizations; lead screenings; etc. (Comprehensive) • Eligible children not receiving services (e.g., WIC, EI) (Comprehensive) • Children in EI and WIC who were never screened for lead (Coordinated)

16. KIDSNET KIDSNET DATA UTILIZATION: BIRTH DEFECTS SURVEILLANCE • Field added in KIDSNET to flag whether child has a birth defect (used for linkage/analysis) • Medical record number and date of birth are used to identify and link hospital discharge data to KIDSNET • Provides demographic data • Link birth defects cases to Newborn Screening, Early Intervention, WIC and Family Outreach Programs to determine referrals and enrollment

17. KIDSNET KIDSNET DATA UTILIZATION: LONGITUDINAL STUDIES • Impact of lead poisoning on educational outcomes • Impact of mobility on preventive services and educational outcomes • Impactof neighborhood factors on mobility

18. KIDSNET KIDSNET FUTURE OPPORTUNITIES

19. KIDSNET KIDSNET FUTURE ANALYSES USING KIDSNET • Teen Pregnancy • track outcomes of children to teens (preventive services, program enrollment, educational outcomes, etc) • Program Evaluation: Newborn Developmental Risk Screening and Home Visiting Programs • PRAMS • compare PRAMS responses with program enrollment (e.g., WIC); preterm births and enrollment in Early Intervention • Other Longitudinal Studies • e.g., KIDSNET, PRAMS and TWOS

20. KIDSNET KIDSNET TOOLS/BEST PRACTICES

21. KIDSNET KIDSNET WHAT HAS WORKED IN RI • Identify uses of data via a group process • KIDSNET staff, program managers, data managers, epidemiologists, etc. • Set priorities • level of impact; “biggest bang for the buck” • available resources • issue of high concern • Identify/find resources: staff and financial • multiple grant sources (Title V; Immunization; etc.) • External partners • Develop realistic timelines • Be flexible

22. Integrated Systems Expansion Program Linkages Excellence Policy Development Quality Assurance Program Enhancements Program Evaluation

23. CONTACT INFORMATION Samara Viner-Brown, MS Chief, Data and Evaluation Division of Family Health Rhode Island Department of Health Tel: 401-222-5935 E-mail: samv@doh.state.ri.us Amy Zimmerman, MPH Chief, Office of Children’s Preventive Services Division of Family Health Rhode Island Department of Health Tel: 401-222-5942 E-mail: amyz@doh.state.ri.us