KIDSNET Partnerships in Rhode Island

1. KIDSNET KIDSNET KIDSNETPartnerships in Rhode Island The Power of Partnerships: Solos to Symphonies October 4, 2004

2. SOLOS: Categorical Programs in a competitive funding market • Funding Streams • Reporting requirements • Program culture • Work in isolation • Data as a propietary possesion- often unused • Budget pressure to “stick to core responsibilities”

3. Some disharmony…. • 9 programs with data/tracking responsibilities • All needed electronic information systems – not enough money to do solo systems right • Multiple programs tracking the same child • Families and primary care providers frustrated - competition for attention, redundant information collection, poor support • While some children received redundant services, others received none • Primary care model of public health but medical homes not always “in the loop”

4. Composing the KIDSNET Symphony! • Public Health Information System for follow- up/assurance of preventive health service • Captures and distributes info for 9 programs • Links health and service care providers to Dept. of Health • Easy access to information for authorized users • Vehicle for ongoing primary/public health partnership

5. What is KIDSNET? KIDSNET KIDSNET • Public health computerized information management and follow-up system that tracks children’s preventive health services • Links health and service care providers to Department of Health • Facilitates sharing of information between authorized users providing services • Promotes comprehensive contacts with families

6. 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

7. Tuning up: Identify partners • National Patrons of Music! (HRSA, CDC, Pew, Carnegie, Robert Wood Johnson) • Musicians (Internal partners from each potential participating solo program) • Audience (External partners – service providers, medical homes, families)

8. First Movement: Develop and Nurture Relationships • Relationships are important – invest in them, nurture them • Understand partners needs up front – LISTEN! • Need Long Term Dedicated Staff • Include all partners early and often

9. Second Movement: Teach partners to sing the same song • Communication is critical – call on experts • Benchmark progress, share it with partners • Go with the future from the start • Patience, persistence & creativity

10. Grand Finale: They’re singing our song! • Increased use of the system • Increased demand for the system • Partners can articulate benefits • Partners see the vision – are looking ahead • Detractors can become your champions

11. Newborn Screening in Rhode Island Blood Spot Lab - NENSP VNA of Care New England Family Outreach Home Visiting Program Pediatric Care Provider Specialty Care Provider Parents Family-to-FamilySupport Geneticist/ Genetic Counseling

12. Summary of Lessons Learned • Need a Vision – clear, shared, sustained • Need a Design and Plan – inclusive, comprehensive • Need Communication Expertise • Relationships are important – invest in them, nurture them • Understand partners needs up front • Need Long Term Dedicated Staff • Include all partners early and often • Benchmark progress, share it with partners • Go with the future from the start • Patience, persistence & creativity • Detractors can become your champions

13. Contact Information KIDSNET KIDSNET William H. Hollinshead, MD Chief Office of Children’s Preventive Services Rhode Island Department of Health 3 Capitol Hill Providence RI, 02908 (401)-222-4655 billh@doh.state.ri.us Ellen Amore MS Manager, Newborn Screening Programs Rhode Island Department of Health 3 Capitol Hill Providence RI, 02908 (401)-222-4601 ellena@doh.state.ri.us