Health Information Technology (HIT) provides the ability to store and manage heath data across computer systems and allows consumers, providers, payers and quality monitors to securely exchange these data. For newborn screening, HIT utilizes public health databases such as Laboratory Information Management Systems (LIMS), Case Management Information Systems, Electronic Medical Records and Electronic Health Records.
APHL Supports HIT Knowledge Sharing Within the Newborn Screening Community
While each newborn screening (NBS) program collects and reports data differently, it is essential for programs to share their experiences, challenges, successes and best practices with others to improve the way HIT operates, and, ultimately, to improve the newborn screening system. APHL facilitates the sharing of these experiences, challenges and best practices by convening subject matter experts from newborn screening programs across the US to participate in the HIT Subcommittee and User Groups to support the development of guidance documents.
As a trusted leader in the newborn screening community, with over two decades of experience, the
APHL Newborn Screening and Genetics program strengthens and improves the role of health information technology
and interoperability in NBS programs through:
Education and training – Developing and disseminating resources, tools, webinars and videos to facilitate interoperability within the NBS community, which are all available publically on the APHL website and the NewSTEPs Resource Library
Technical assistance – Providing individualized technical assistance in collaboration with APHL Informatics to NBS programs around Laboratory Information Management Systems, database management, query development for data extraction, electronic orders and results reporting and other forms of data exchange
Collaboration - Fostering online collaboration through HIT communities of practice platforms that permit discussion with peers, connection with experts, asking questions, sharing resources, as well as opportunities for learning amongst peers and experts in the community
Data visualization – Developing visualizations for quality improvement purposes to provide fuller pictures of the national NBS system, and displaying opportunities for improvement
Quality improvement – Supporting NBS programs in various initiatives through coaching, site visits, technical and financial assistance to improve the overall quality of the newborn screening system
The Newborn Screening HIT Subcommittee
The Newborn Screening HIT Subcommittee, spearheaded by the Newborn Screening and Genetics program, has a mission to support the responsible development and implementation of health information technology-related solutions for newborn screening programs and their associated stakeholders. The Subcommittee is primarily comprised of newborn screening personnel from local and state laboratories and health departments, as well as federal partners such as the Health Resources and Services Administration, Centers for Disease Control and Prevention, and National Library of Medicine. The Newborn Screening and Genetics program and the Informatics program at APHL collaborate on this project.
The HIT Subcommittee also maintains four User Groups where users can meet to discuss challenges and solutions with respect to their LIMS, or share their general experiences around:
OZ systems (ad-hoc)
To learn more about the HIT Subcommitee or User Groups, contact Sari Edelman, senior specialist, Newborn Screening & Genetics.
Fact Sheets, Toolkits & Visualizations
NewSTEPs Data Repository
The NewSTEPs data repository, a centralized and secure database for newborn screening programs, now allows users to enter HIT-specific laboratory elements to their profiles.
If your program does not yet participate in the NewSTEPs Data Repository, we encourage you to learn more about the repository. Data on the site can be accessed by authorized users from anywhere and allows newborn screening programs to explore data to meet and inform local program needs. Participants have access to their own data plus aggregate data reports with data from other participating newborn screening programs.