EHDI Tracking and Surveillance The Rhode Island Hearing

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

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

Database Tracking Software • RITRACK, Version 2. 1 – Non-commercial DOS-based independent system – Hearing screening information uploaded to KIDSNET

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

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

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

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

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

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

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

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

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

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