Newborn Screening Exchange Program

By Barbara Schweitzer

An exchange program between state Newborn Screening (NBS) Programs has been established by the Heartland Collaborative. The goal of this program is to identify areas in which one state can learn from another by arranging in-person visits for assistance and education.  This program facilitates information exchange and learning, relationship building, networking and collaboration among the states in our region.

The Heartland region has several work groups, one of them being Newborn Screening.  Members include state NBS coordinators, lab personnel, family members, clinical service providers and other stakeholders. The NBS work group identified a need for a Newborn Screening Exchange Program. The discussion around this concept was initiated by Dr. Sara Copeland, and the fact that newborn screening, particularly expanded newborn screening by tandem mass spectrometry, is still in the early stages of development and implementation. It was felt that the learning curve could be minimized by learning what other states are doing.

This program is an exchange among and between states for the follow-up, lab staff and lay advocate, or family members. The program involves pre-assessment, planning, 1.5 day visit and post-visit assessment. Prior to an exchange visit, goals and objectives were identified by the visiting state, by utilizing a portion of the Program Evaluation and Assessment Scheme (PEAS) for Newborn Screening Systems, developed and supplied by the National Newborn Screening and Genetics Resource Center.  The PEAS tool can be used for assessment and evaluation of the quality or functions of individual screening system components, or the system as a unit.  It provides a uniform set of questions that can be used as a self-assessment tool in evaluating the way in which the various parts (education, screening, follow-up, diagnosis, management, and evaluation) of individual screening systems function.  

The developed goals and objectives are reviewed by the visiting staff, the host state and the Heartland Regional Coordinating Center.  After the visit is complete, evaluation encompasses the following:

1. Identify and complete sections of the “Program Evaluation and Assessment Scheme (PEAS) which are aligned with the purpose of the visit.
2. Provide a written summary of the visit (1-2 pages)
3. Develop a written action plan for improving performance indicators
4. Complete a re-assessment of the respective PEAS evaluation by Spring 2009
5. Turn in the completed report to the Heartland Regional Coordinating Center