Resource Explorer

WHAT IS TriNetX Live?

TriNetX Live is a cloud-based platform that allows UVA researchers to explore de-identified UVA medical record data. Because the health data is presented in aggregate without any patient identifiers, human subject ethics (IRB) approval is not needed in order to query health data through this interface.

WHY USE TriNetX?

TriNetX Live makes it simple to refine research design and assess protocol feasibility using real patient data (Epic data from 2010 to the present, with data refreshed weekly).

The following can be accomplished in this tool:

• FEASIBILITY: Determine if a sufficient patient population matches a protocol
• DESIGN: Analyze inclusion / exclusion criteria and the impact of protocol changes
• COHORT EXPLORATION: Investigate attributes and comorbidities of the eligible cohort
• TRENDS: View the rate of incidence of your query criteria over time in the specified population
• RECRUITMENT: Find eligible patients for an active clinical trial by submitting a re-identification request

HOW DO I GAIN ACCESS TO TriNetX Live?

To gain access to TriNetX Live, email researchdata@uvahealth.org to establish a new user account. You will need to a UVA user id and have current human subject CITI certification to be given an account.

When your account is activated:

1. You will receive information about training materials available within TriNetX Live
2. You can arrange a personal training session as needed (see training section below)
3. You will login to the system using the "Visit Website" button above or from link you received.

All UVA users login through Netbadge. Note that only UVAHealth users are required to be on a secure UVAHealth network to log in to TriNetX. This is due to health system requirements tied to Netbadge and is not a requirement at the application level. Academic users can login through any network.

WHAT DATA DOES TriNetX Live INCLUDE?

Epic Data: Most of TriNetX data come from UVA Epic via a mapping to the UVA OMOP data repository. It consists of coded medical record data recorded in Epic on or after 9/28/2010 (the "Go Live" date of Epic at UVA). TriNetX is refreshed weekly by each Tuesday to reflect data up through the previous week.

· DIAGNOSES: ICD9 or ICD10 Code associated with the diagnoses tied to the encounter level of service. Patient declared problem lists are not included.

· PROCEDURES: Procedures include skin biopsies, "Laryngoscopy, flexible fiberoptic; diagnostic", and other types of procedures. We recommend you search procedures by name or use ICD codes in addition to CPT when you search. You will likely not get accurate counts if you search on CPT alone.

· MEDICATIONS: Medication administered to inpatients or during an outpatient (if documented), outpatient medications prescribed, and patient-reported medication lists where RXNorm codes are identified during an encounter/visit.

· LABS: Laboratory tests ordered in Epic with documented results.

· VITALS: Blood Pressure Diastolic, Blood Pressure Systolic, Body Mass Index, Heart Rate, Respiratory Rate, Temperature, Weight, Height, and Oxygen Saturation from inpatient and outpatient encounters. Please note that vitals appear in the Lab section of the TriNetX interface. (See page 2 here for instructions on how to add Vitals within your TriNetX Query)

· DEMOGRAPHICS: Gender, Age, Race and Ethnicity sourced from the Epic Patient Record.

· VITAL STATUS (DECEASED): Date of death is available for query when recorded in the Epic Patient Record. Note this can be found inside of Demographics.

· VISIT TYPE: Visit Type (i.e. Emergency, Ambulatory (Outpatient), or Inpatient Encounter) associated with the EPIC encounter. (See page 1 here for instructions on how to add Visit Type within your TriNetX Query)

Cancer Registry: UVA's TriNetX Live instance also reflects data from the UVA Cancer Registry for diagnosis year 2018 and later. This data is updated on a monthly basis in TriNetX instead of weekly basis. The Cancer Registry data can be queried through the special Oncology domain in TriNetX and are mostly represented by ICD-0-3 codes. Note that this is in addition to cancer facts captured in Epic which you may find in the above Electronic Health Record domains. Criteria specific to both data sources can be included in any TriNetX query. Please note that Cancer Registry data is manually curated. As a result, there may be a lag of 6 months to 2 years for some of the data domains.

· PRIMARY SITE

· HISTOLOGY

· BEHAVIOR

· AJCC staging

· BIOMARKERS

· CHEMOTHERAPY LINES OF TREATMENT

Missing Data: If you believe that TriNetX is not accurately reflecting UVA health record data, please contact researchdata@uvahealth.org.

LIMITATIONS

· Patient counts are always rounded up to the nearest 10 in this system in order to protect identities in small populations. Tables of data at the patient-level are available upon request (see next section). For more technical specifications regarding the data mappings from Epic to TriNetX, refer to the attached TriNetX Live Data Details.

· Notes data is not available in TriNetX. Only facts represented by codes related to categories in the above section are searchable with this tool.

· Not all flowsheet data is available in TriNetX.

· Although lab values and units are available in TriNetX, normal ranges change over time and can be specific to the institution. For UVA lab ranges, refer to this page.

· Inpatient drug orders are not included unless the drug is administered. This is because TriNetX does not provide a filter at this time to distinguish between the two and many inpatient ordered medications are not given.

· UVA Cancer Registry data represent patients who are diagnosed and/or treated for a condition (benign to malignant) that is reportable as defined by Commission on Cancer (CoC) and State of Virginia Central Registry. Currently it does not include UVA community health patients as the former Novant Health facilities maintain separate cancer registries.

Contact researchdata@uvahealth.org of you need notes data or other data not in TriNetX.

ACCESS ADVANCED ANALYTICS

There are also tools available in TriNetX that allow users to run analytic models on their custom cohorts directly through the interface. Built in, automated features include propensity matching, outcomes comparisons, treatment pathways, incidence, prevalence, competing risks, etc. Because the interface masks the detailed source data for privacy reasons, the analytic results are preliminary only. Researchers must first obtain, interrogate, and clean tabular patient-level data to generate formal research results. To request access to the advanced analytics tools, complete an appropriate use attestation here.

HOW DO I REQUEST DATA SETS OR RE-IDENTIFICATION OF COHORTS?

Although no identifiable data is available through the TriNetX application, our internal Research Analytics team at UVA does have the ability to re-identify patients from the cohorts identified by your queries and/or to provide detailed data reports related to this population. If you require re-identification of patients, you will first need IRB-HSR approval or a letter of exempt determination, then you can place the request with our team. Refer to the re-identification process document for details. Please note that receiving a list of MRNs that matches your query is free and something you will receive within 2 business days from the time you submit the request through TriNetX. Any custom coding to provide you with row level patient data (besides cohort MRNs) is billed at cost as described on this page.

HOW DO I GET HELP AND TRAINING?

Query Logic: The TriNetX team is on hand to provide query building support and you can submit questions to them directly through the application. Help documentation is available from within the application.

UVA Training: To learn more about the UVA data you are exploring or request a personal consult or training on this tool, visit PHS @ the library.

CLINICAL TRIAL OPPORTUNITIES THROUGH TriNetX Live

Aggregate query results from TriNetX can be used by sponsors to help design clinical trial protocols and shape patient eligibility criteria, test protocols against real world patient data, and identify potential sites with a sufficient number of potential study patients who meet study criteria. In partnership with TriNetX, UVA receives regular offers to participate in a variety of sponsored clinical trials as an enrolling site. For information about current opportunities, contact the UVA Clinical Trials Unit team.

Why Don't I See Other Institutions in TriNetX?

UVA only participates in TriNetX Live (single site product). At this time, UVA has not agreed to the legal terms that would enable joining the TriNetX Research Network.