Innovations in Newborn Screening Interoperability Program (INBSI) Evaluation

Project start date and end date: September 1, 2020 – August 31, 2023

Background:
This project aims to evaluate the Innovations in Newborn Screening Interoperability (INBSI) Program under subcontract to the Altarum Institute (Ann Arbor, Michigan).  Altarum Institute was awarded a 3-year cooperative agreement to establish the INBSI Resource Center to enhance data interoperability within newborn screening (NBS) systems nationally.  The overarching goal of the Program is to foster improved information with the aim of reducing morbidity and mortality associated with heritable disorders in newborns and children. The INBSI Resource Center will serve as the national leader and resource on health information data interoperability to support newborn screening, providing technical assistance (TA), training, and education in data interoperability to state NBS programs.  

Objectives or Specific Aims:
This evaluation employs formative and summative methods to assess the use and impact of INBSI resources, including ongoing technical assistance, training, and educational materials. CHEAR provides quality improvement support to the INBSI program to monitor ongoing processes and measure progress towards the goals and objectives of this project.  At the conclusion of the cooperative agreement, summative information will describe the impacts that the INBSI program on state NBS programs, providing an assessment of overall INBSI program success. 

Research Methods:
This project will be an evaluation of the INBSI Program with three overarching aims:

1. Develop Metrics to assess use of INBSI resources, including quantitative and qualitative measures related to the quality of technical assistance, training, and educational materials;
2. Collect Evaluation Metrics of the use of INBSI interoperability resources and materials among states, exploring current staff acceptance and usage, including perceived benefits of and barriers to implementation; and
3. Identify Opportunities for Improvement pertaining to content and dissemination methods, among a subset of states.

The evaluation of the INBSI will utilize objective measures as well as self-reported data to assess the extent to which the overall objectives are met throughout the program.  At the conclusion of the INBSI program performance period, the summative evaluation findings will be incorporated into the INBSI program final report to gauge the program’s impacts.

Implications:
This evaluation will enable identification of opportunities for improvement in electronic interoperability support to the INBSI Program, with the ultimate goal of improving the timeliness, completeness, and accuracy of information supporting newborn screening. 

Funding statement:
The project is funded by the Department of Health and Human Services, Health Resources and Services Administration (HRSA)