EHDI Tracking and Surveillance

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