March 13-15, 2016 • San Diego, CA


  |   -   |  9 - Program Evaluation and Quality Improvement

EHDI Program Evaluation and Quality Improvement through a National Data Repository

NewSTEPs is the Health Resources and Services Administration (HRSA) funded project to support and provide technical assistance and a data repository for newborn screening programs. The data repository (www.newsteps.org) collects program information on all state and territorial newborn screening programs, including Point of Care screenings for hearing loss and Critical Congenital Heart Disease. NewSTEPs related EHDI activities include collecting data in these categories: state profiles and quality indicators. The state profile data provides an overview of state newborn demographics, currents disorders being screened, which regulatory authority provides approval for Point of Care screening, and how Point of Care screenings are or are not integrated within an information system. There are eight quality indicators for which NewSTEPs will be collecting data and six of these indicators include information pertinent to Point of Care screening as well as blood spots. These indicators were developed to track program changes over time and to allow for comparisons to regional and national averages. Memorandums of Understanding have been executed to ensure understanding on the data being collected and how they will be used. Discussion on the data points in the quality indicators and how they can be utilized by state EHDI programs is the focus of this presentation.

  • Understand how this data repository could help evaluate EHDI programs
  • Learn about the quality improvement indicators
  • Understand how the quality improvement indicators can be used by the EHDI program to show program changes over time

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Thalia Wood (Primary Presenter), APHL, thalia.wood@aphl.org;
Ms. Wood currently is a Specialist in the Newborn Screening and Genetics Program at the Association of Public Health Laboratories working directly in the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs). She leads the Critical Congenital Heart Disease and Short Term Follow Up work groups who put together educational webinars for the state Newborn Screening Programs. As a member of the Evaluation Work Group she helped develop tools for newborn screening programs for self-evaluation. Ms. Wood has a Master’s of Public Health degree with an emphasis on Maternal Child Health from Loma Linda University. She was the Children’s Health Unit Manager for the State of Alaska for 11 years. In this role, she managed the Newborn Metabolic Screening Program and oversaw the managers for newborn hearing screening, genetics clinics, autism screening clinics, and other programs for children and youth with special health care needs.


Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.