Building Blocks: Newborn Screening Health IT Implementation Guide and Toolkit

The NewSTEPs 360 project, funded by the Health Resources and Services Administration (HRSA), works with newborn screening (NBS) programs to improve the timeliness and accuracy of NBS from birth to results reporting. Because the immediacy of results could mean life or death for a newborn, the NewSTEPs mission includes activities to implement health information technology solutions and electronic messaging. The use of electronic messaging for NBS speeds the results process, thus providing the most efficient, accurate and earliest care to our youngest citizens.

Several NBS programs have implemented, or are in the process of implementing, NBS messaging using program-specific methodologies with varying levels of success. To address the different approaches and inconsistent results of NBS messaging projects, NewSTEPs 360 partnered with the Virginia Division of Consolidated Laboratory Services (DCLS) and J Michael Consulting (JMC) to assemble a resource guide that offers the NBS community practical instructions and best practices for implementing a NBS electronic data exchange.

Building Blocks: Newborn Screening Health IT Implementation Guide and Toolkit is intended to fill a critical void in the world of newborn screening. The purpose of the Guide is to provide practical information to project teams that are instituting electronic messaging for NBS programs. The Guide uniquely addresses the diverse audiences related to initiating and sustaining this project and clearly outlines the steps needed to stand up electronic messaging with partners from start to finish. The detailed content of the Guide speaks to all those involved in this kind of project—laboratory professionals, project managers, hospital administration, subject matter professionals, nurse managers, and project stakeholders, among others.

The Guide is written primarily from the perspective of a state public health laboratory implementing electronic test orders and results (ETOR) with at least one hospital. In certain cases, it may be the NBS program that is managing the implementation. Nevertheless, throughout this document, we refer to the "laboratory" as the responsible entity for stylistic simplicity and because the laboratory will be the entity most affected by the new processes. In our hypothetical implementation, the laboratory has opted to utilize the Health Level 7 (HL7) 2.5.1 standard to accomplish this ETOR. It is assumed that the laboratory will design messages based on the HL7 Laboratory Results Interface (LRI) and Laboratory Orders Interface (LOI) Implementation Guides developed by the Standards and Interoperability (S&I) Framework. HL7 is generally considered to be the common standard for electronic public health messaging, but the laboratory may choose an alternative form of data exchange, such as a web portal. While HL7 messaging is the focus of this Guide, the majority of the advice offered applies to any type of data exchange implementation.

To provide targeted help for a variety of disparate professionals, the Guide is designed to be modular in use. This arrangement allows project teams or individual contributors to go directly to the portions of the guide that pertain to their specific needs, regardless of their focus. In other words, users can approach the Guide in an à la carte fashion. For example, a project manager may not need to take a deep dive into the nuts and bolts of message orders, while a subject matter expert (SME) may appreciate the more granular details related to HL7 messaging. Readers can use the SME Matrix described below to navigate to the content that is most relevant to them.

The activities described in Section 1 help guide laboratories in initiating successful implementation of NBS electronic messaging. The first step in preparing for any health IT implementation is to assemble internal stakeholders, agree on the scope and objectives of the project, and assess the laboratory’s readiness to take on this project. The laboratory must create documentation and project artifacts to help describe the project to the decision makers who can authorize the project. A significant effort in this planning stage may focus on cost and resource estimates and identifying funding.

Next, the laboratory must evaluate and prepare its internal workflow, messaging capabilities, vocabulary, and systems to accommodate electronic messaging. At this stage, the laboratory should select a messaging guide and define the message content and requirements clearly. The laboratory should also diagram the technical solution that it will use to enable the laboratory systems to receive and process test orders and generate and send results. In concert with these activities, the laboratory is likely building relationships with hospital partners; these efforts are summarized in Section 2. Once the steps described in Section 1 have been accomplished, the laboratory will be ready to begin implementing NBS messaging with hospital partners.


Section 1

Getting Ready for Newborn Screening Electronic Health Data Exchange

Section 2

Managing Relationships with Hospitals for Newborn Screening Data Exchange

Section 3

Implementing Newborn Screening Data Exchange with a Messaging Partner

Section 4

Operations and Maintenance of Newborn Screening Health Data Exchange

Section 5

Tools Reference Guide

Section 6

Abbreviations and Terms

Section 7

Subject Matter Expert (SME) Matrices