TriNetX
TriNetX is a self-service tool that allows researchers to determine approximately how many patients in the Clinical Research Enterprise Warehouse meet certain criteria. Researchers use an intuitive user interface for selecting query criteria from UC Health’s clinical (Epic) repository.
TriNetX can be used to answer questions such as “How many patients do we have that have a diagnosis of atrial fibrillation who are taking anticoagulants between the age of 38 and 89 who are also on Warfarin?” Search criteria can include patient demographics, ICD coded diagnoses, laboratory test results and medications. It also allows for outcomes analysis—see an example.
TriNetX is covered by a UC-IRB protocol and HIPAA waiver. The data is considered a Limited Data Set as it contains specific dates. Otherwise it is de-identified. To accomplish this, a series of methods are used to “cloak” data such as date grouping and obfuscation of small numbers. This means the queries return an approximate count of the number of patients matching the search criteria, rather than the actual count.
Researchers can access TriNetX 24/7 to extract data and evaluate cohorts. Whether you are looking for particular clinical relationships or trying to identify if there are enough potential patients available for recruitment, TriNetX offers a flexible and dynamic tool for initial analysis. All queries you create are stored under your profile. When you are ready for a deeper dive, the Center for Health Informatics (CHI)—as the University’s Honest Broker—can access the warehouse and extract actual numbers and identified data based on IRB approvals.
To best use this tool, users need to understand where the data came from and in what context. The best example of this is the source of the diagnosis codes. Currently, the ICD codes come from the problem list, encounter and billing codes. Because of the complexity of Epic and clinical workflow, source of diagnosis codes vary. By including all three data elements, we find patients with a diagnosis code that could have come from all or any of those three areas. This means if a patient was ever diagnosis with “pancreatitis” they will be counted although they may no longer have pancreatitis. The metadata (data description section) explains the source and description of the data elements.