15th ANNUAL EARLY HEARING DETECTION & INTERVENTION MEETING
March 13-15, 2016 • San Diego, CA

| - | 6 - Follow-up, Tracking and Data Management

Using an Integrated EHDI-IS to facilitate Follow-up with Community Partners

Rhode Island EHDI work closely with community partners to assure follow-up. Contributions to the accomplished partners to assure Newborn Hearing Screening in Rhode Island are due to the Rhode Island’s EHDI-Integrated System (IS). Rhode Island’s EHDI-IS includes KIDSNET, an integrated data system that links several newborn and early childhood preventive screening services. KIDSNET facilitates the collection and appropriate sharing of health data to assure the provision of timely and appropriate preventive health services and follow-up. Several successful EHDI community partnerships have been developed as a result of access to KIDSNET. EHDI staff can check KIDSNET for participation in the following, and request assistance in assuring EHDI follow-up for approximately 900 infants annually. • Women Infants and Children – WIC facilitates screening during WIC appointments or helps schedule audiological appointments. • Family Visiting Program - Utilize evidence based home visiting programs to outreach to families and offer in home hearing screenings or ensure completion of follow-up appointments. • Early Head Start - Early Head Start nurses will provide screening data or assist with facilitation follow-up appointments. • Early Intervention – Confirm enrollment, treatment, and intervention services of all children diagnosed with hearing loss. EHDI cc’s EI on follow-up letters sent to families. • Audiologists - Ensure diagnostic information is entered in KIDSNET or submitted on paper by community audiologists and a follow-up evaluation has been completed. Rhode Island EHDI hopes that consistent engagement with community partners to work with families on the EHDI process will reduce lost to follow-up.

Describe how access to integrated data can facilitate EHDI follow-up
Identify strategies for sharing data with community partners to engage families with follow-up

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Ellen Amore (Co-Presenter,Author,POC), RI Dept. of Health, ellen.amore@health.ri.gov;
Ellen is currently the Manager of KIDSNET, Rhode Island’s Integrated Child Health Information System that contains preventive health care (including EHDI) information for Rhode Island children. Other programs at the Rhode Island Department of Health that she has managed include Newborn Hearing Screening, Newborn Bloodspot Screening, Newborn Developmental Risk Assessment and home visiting. Prior to coming to Rhode Island, she was a Program Assistant at the University of Connecticut Center for Environmental Health, and worked on several health related research studies at the University of Connecticut and Yale University. Her education includes a BA in Human Biology, with a concentration in child development, from Stanford University, and an MS in Maternal and Child Health from the Harvard School of Public Health.