This project is focused on the consensus development of standards needed for data management in neurocritical care. Neurocritical care is a new discipline in medicine and rapidly growing with new knowledge about the injured brain and new ways to measure it. Patients in neurocritical care are high-volume data generators and this field is ripe for the use of big data technology. Unfortunately, there is a lack of standardized terminologies as well as metadata to describe how it was collected. Our goal is to create a comprehensive vocabulary specific to neurocritical care by leveraging existing standards and filling in the gaps.
The problems encountered in neurocritical care terminology are as follows:
- Orphan Terms: Terms that have no standard definition (e.g. partial pressure of brain tissue oxygen)
- Multiple Definitions: Terms that have different definitions in multiple standards (e.g. Intracranial Pressure)
- Ambiguous Terms: Terms that are ambiguous (e.g. Mean ICP)
- Structure: A general lack of the sematic structure of the terms (ontology)
- Metadata: A lack of metadata or annotations important in further defining a term (e.g. EVD stopcock open/closed)
Our approach is as follows:
- Scope: Our scope is limited to physiological measurements obtained from patients such as intracranial pressure, brain oxygen, pupil reactivity, blood pressure, etc.
- Priority: The priority is to focus on the more neuro-centric measurements.
- Resources: We are reviewing existing standards and documents to determine gaps in nomenclature and areas of ambiguity. We are working with existing projects such as Common Data Elements, OHDSI, and others.
- Tools: We have developed a wiki, discussion forum, and Github to document our progress (see below)
- Consensus Group: We are creating subject matter consensus groups to develop and refine the terminology and ontologies. We are working with several professional organizations such as the Neurocritical Care Society.
- Publications: Our work is available on our website and is periodically published and presented at scientific meetings.
The tools we have created and their intended use are as follows:
- Terminology Wiki: This wiki is devoted exclusively to terminology issues. The purpose is to organize existing information and to document our progress.
- Discussion Forum: The Vocabulary category in the discussion forum is devoted to discussions on terminology. Topics focus on specific measurements and related issues.
- GitHub: We are developing a repository of documents related to our topics and/or generated by our group.
You many freely view the results of our work. Join the group to participate in the discussions and help with project.