1. EHDI Tracking and Surveillance The Rhode Island Hearing Assessment Program Cheryl A. McDermott, MS, CCC-A

2. Rhode Island Legislation Mandates universal newborn hearing screening state-wide Does not mandate reporting of dx results to the state Does not address tracking of infants Parents have the right to refuse screening Text of legislation available at www.infanthearing.org

3. Database Tracking Software RITRACK, Version 2.1 –Non-commercial DOS-based independent system –Hearing screening information uploaded to KIDSNET

4. KIDSNET Pediatric preventative health care data management, tracking and information system Includes selected data from: Vital records (birth) Newborn screening (heelstick or bloodspot) Newborn developmental risk assessment Immunization registry Hearing screening WIC Early Intervention Home Visiting Lead screening

5. Populating the Database WIH – demographic information downloaded from hospital database daily Partner hospitals – transfer demographic information on paper forms weekly, with all screening data All results reviewed by audiologist Results and recommendations entered manually by data clerk

6. Available Data Items Initial screen results – OAE and AABR Rescreen results – OAE and AABR Audiologist recommendation Diagnostic ABR results Diagnostic VRA results Risk factors entered into database

7. Record Identifiers RITRACK –assigned a unique ID number –Records matched by RITRACK #, DOB, child or mother MR #, child or mother last name or first name

8. Data Integration Hearing screen data uploaded from RITRACK to KIDSNET twice per week –Any record created or altered during that time Identifiers for matching in KIDSNET –Mother’s MR # –Child’s year of birth –Hospital code –Multiple birth code –RITRACK # - once in system, after first submission of data –“Hold File” if no match

9. Health Care Providers Notification of PCP –If child needs follow-up, PCP notified by letter generated from RITRACK –At this time, no notification of children who pass and are discharged from the program –PCP can view a “child profile” as well as hearing screen results in KIDSNET Dx reports from providers received via mail or fax Information is entered into RITRACK manually

10. Parents and Family Families notified of newborn hearing screening via prenatal classes, information in preadmission packet, brochure at time of screening, video on hospital TV channel Reminders for hearing testing/follow-up generated from RITRACK Parental consent is not required for newborn screening or tracking in RITRACK, but parents can opt out of KIDSNET

11. Children’s Services and Collaboration Two RIHAP Committees – foster collaborative efforts Advisory Committee –Mandated –Provides regulatory oversight –Members: audiology, pediatrics, insurance, special ed, hospital neonatal nurseries, Deaf community, RI DOH, Early Intervention, parents

12. Children’s Services and Collaboration Follow-up Committee –Mission is to identify and address gaps in services and access barriers for families and professionals –25 members representing a wide array of professionals, families, agencies and advocacy groups

13. Access to Information Both RIHAP and KIDSNET have written policies re: access to information and confidentiality RIHAP –Physician in birth record may have access –Other agency staff may have access with appropriate release forms KIDSNET –Broad Health Care Confidentiality law –Participating PCPs have access –Participating programs have individualized access according to protocol based on need to know, legislative constraints, etc