Title: '“Oh the Things We Can Do…with Data from Vital Records” '
Track: 6 - Follow-up, Tracking and Data Management
Keyword(s): Data integration, vital records, follow-up, demographics, linkages
Learning Objectives:
  1. Participants should be able to compare and contrast the benefits and limitations of integrated data from a Vital Records System
  2. Participants should be able to extrapolate uses for enhanced demographic data from other health service data systems
  3. Participants should be able to utilize the methods explained to build a similar data link


Accessing robust, comprehensive, patient specific information on every baby in Arizona is both critical to have and difficult to obtain. Without reliable demographic information, case management is often limited; finding and following up with families quickly, so that available screenings, diagnostic evaluations, or early intervention services are communicated timely becomes an odyssey. Moreover, program evaluation is limited without access to mother’s race, ethnicity, education, and age; social determinants that contribute to high loss to follow up. Learning about the correlation between the numbers of miles a family has to drive to reach an audiologist for example can have far reaching implications on program resource allocation, outreach, and activities that might prove effective. Bridging the gap between what’s available to a hospital based hearing screening program prior to discharge and what is known about the newborn or infant once the birth is registered is the topic of this poster presentation. Data from the 2012 survey indicates that over 400 babies in Arizona were not documented as screened and were unknown to NBS. Having reliable demographic information on these infants increases the likelihood that the Follow-up team are able to identify and target babies born outside of a hospital, those transferred shortly after birth, babies with prior unmatched records, infants missed from the hospital, as well as babies with very low birth weight or Apgar scores—all essential criteria to be successful in reducing the high loss to follow-up of unknown kids. The success of data integration between the AzEHDI database (Hi*Track) and OVR data system has many advantages However, long term sustainability of a project of this scale include partnerships, technical support, data system expertise, support from IT teams and buy-in from the OVR leadership teams. Don’t forget collaboration, innovation, and above all perseverance!
Presentation: Poster_SondiAponte_1679.pdf

Handouts: Handout_1679SondiAponte.pdf
CART: CART Transcription is not Available
Sondi Aponte - Primary Presenter,POC
Az Dept of Health Services
     Credentials: Office of Newborn Screening Quality Improvement, Education and Outreach Manager
      With 15 years’ experience in technology, program development, and training, Sondi Aponte is the Quality Improvement, Education and Outreach Manager with the Office of Newborn Screening (ONBS) program at the Arizona Department of Health Services. In that capacity, she develops quality assurance measures, monitors program outcomes, oversees hearing grants, and is the project lead on the CDC Data Integration grant. Program quality improvement responsibilities include data evaluation and analysis, report creation and overall data integrity. Partnership development and enhancement are crucial components of her job, representing the ONBS with The Az. Academy of Pediatrics, The Arizona Perinatal Trust and The EAR Foundation of Arizona (EFAz) among others.Sondi develops and implements training materials and educates clinical providers and families on newborn screening best practice.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Gidget Carle - Co-Presenter
Arizona Department of Health Services
     Credentials: BSN
      Ms. Carle joined the Newborn Hearing Screening follow up team in September 2012. She has more than 19 years in medical clinical settings. Ms. Carle is the team leader for the hearing screening program and oversee activities performed by hearing Follow up Specialists for well babies. She monitors progress made based on the EHDI 1-3-6 goals. Ms. Carle is responsible for establishing protocols, policies and procedures for effective follow-up.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Fran Altmaier - Co-Presenter
Arizona Department Health Services
     Credentials: BSW
      Fran is the Case Management Coordinator at the Arizona Department of Health Services, Office of Newborn Screening. She provides administrative oversight to the follow up teams for both hearing and bloodspot. Prior to becoming the Coordinator in November 2014, Fran spent the prior 2 1/2 years as the High Risk Coordinator/Project Specialist. She provided follow up to all newborns who spent >5 days in a NICU and did not pass their newborn hearing screen as well as completing CQI projects related to reducing LTFU. Fran has a Bachelor of Social Work degree. Before joining the Newborn Screening Program nearly 3 years ago, Fran spent 18 years as a social worker in the early intervention field.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.