The Need for a Harmonized Technology
Establishing consistent terminology for concepts associated with pediatrics and pediatric conditions is a critical step in enabling interoperability among NICHD computer systems. Pediatric clinical research contains unique concepts not found in clinical research focused on adults.
The NICHD has an ongoing effort to establish, through stakeholder consensus, a core library of consistent and harmonized pediatric terms. Reaching stakeholder consensus on terminology will benefit pediatric clinical researchers in the following ways:
- Provide the infrastructure necessary to compare and aggregate data and information.
- Prevent misinterpretation.
- Improve precision of data sharing.
- Permit more robust meta analysis.
- Establish consistency with the health care delivery system across the NICHD’s clinical research portfolio, across the portfolios of other NIH
Institutes/Centers, as well as with the broader research community.
To commence this Initiative, the NICHD began with a focus on developing a consistent and harmonized approach for neonatal and infant examinations. The terminology harmonization process involves identifying relevant concepts, identifying terms and definitions to describe the concepts, and graphically depicting the structure of and relationships between the concepts. This process is enhanced by collaboration within the community in contributing to the terminology harmonization.
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Establishing the Terminology
As part of the Initiative, the NICHD is generating a framework for harmonized terminology for neonatal and infant examination tools. This examination framework will initially consist of five dimensions:
- Neonatal and Infant Identification/Demographics
- Physical Examination
- Behavioral and Neurological Examination
- Biochemical/Physiologic/Genetic Examination
- Imaging/Other Findings
This Initiative identifies specific concepts and terms within neonatal and infant examination tools and uses existing resources, for example, the National Cancer Institute (NCI) Thesaurus and the Systematized Nomenclature of Medicine (SNOMED), to harmonize the various fields and develop consistent terminology for these areas.
The NICHD will facilitate stakeholder review of and input into the proposed terminology through multiple approaches and feedback solicitations, as well as through working group activities. Once the key concepts are identified, the terminology will then be incorporated into a thesaurus, and a model will be developed to depict the concepts, attributes, and relationships between and among the concepts. This model will then used to generate content-specific research tools (for example, clinical research forms) based on and utilizing the terminology.
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Building on Existing Infrastructure and Resources
The NICHD is leveraging NCI’s semantic infrastructure and open-source clinical research tools, developed through the cancer Biomedical Informatics Grid (caBIG®) program, to generate harmonized neonatal and infant examination terminology. This activity includes collaboration with NCI’s Enterprise Vocabulary Services group.
For more information regarding these resources, please visit the following sites:
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Terminology Development Process
The NICHD will follow these steps to develop the harmonized terminology:
1. Identify concepts and reference terminology:
- Determine the terms that will require harmonization.
- Identify which of the terms are unique concepts.
- Reference terminology resources to find matching concepts.
2. Develop model: - Develop a model for concepts as a terminology that depicts concepts and their attributes and the relationships between concepts.
- Prepare terminology to be incorporated into a reference terminology, such as the NCI Thesaurus.
3. Annotate model: - Use terminology curation tools, such as the NCI’s Semantic Integration Workbench (SIW) to annotate the model with the reference terminology.
4. Review concepts with the community: - Inform experts in pediatric community of terminology development effort and facilitate collaboration.
- Solicit input and feedback on proposed concepts from the pediatric community and harmonize with model.
5. Load metadata and generate tools: - Load metadata from the annotated model to a metadata repository, such as the NCI’s cancer Data Standards Repository (caDSR).
- Leverage open source clinical research tools to extract metadata to generate content specific clinical research tools.
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