EMR Data Retrieval for Research
UC Davis researchers can acquire patient data for research from the electronic medical record (EMR). The source and type of data needed dictate the process to access the data. It is necessary to understand the types of data available, sources of data, and process to gain access to data.
After required training, researchers may request access to Cohort Discovery and the Accrual to Clinical Trials (ACT) Network, two self-service tools that can be used to conduct queries based on database fields in a repository of de-identified patient data. The output of these tools is a numeric count of patients that matches the criteria identified in the query, sorted by site (if more than one site is included in the query). The numeric counts can be used to assess the feasibility of a study or hypotheses by identifying whether there are sufficient prospective subjects based upon the criteria input during the query process.
Researchers subsequently requiring identified data from the EMR must gain regulatory approval required for the database that best serves their needs (as described below). These researchers must also submit a request in the UC Davis Health IT Service Hub (ServiceNow) by following these instructions.
Cohort Discovery is an informatics tool that enables researchers to query a repository of patient information from UC Davis Health patients gathered from multiple sources, including electronic medical records, lab results, and demographic data. UC Davis researchers who complete the Cohort Discovery Introductory Training Session (course code: DAHS-ITR-50082) will receive a Login ID and password for Cohort Discovery after completing and submitting the Cohort Discovery Confidentiality Agreement (PDF) to email@example.com.
If you have questions about Cohort Discovery, send an email to firstname.lastname@example.org.
Data Explorer - Retired
With over six years of service, thousands of queries, and a dataset of over 14 million patients, Data Explorer (also known as University of California Research eXchange, or UC ReX) was taken offline on July 1, 2019. This step was taken in preparation for the adoption of a new national data sharing platform, the ACT (Accrual to Clinical Trials) Network. Read below to learn more about ACT.
ACT (Accrual to Clinical Trials) Network
The UC Davis Clinical and Translational Science Center has partnered with the ACT Network to expand the reach of its real-time cohort exploration and discovery tool. ACT is funded by the NIH through the National Center for Advancing Translational Sciences (NCATS) and was developed by members of the Clinical and Translational Science Awards (CTSA) Program consortium. ACT offers open-access to a national network of leading academic medical research centers and generates aggregate patient count data from an investigator's real-time, iterative searches. The ACT Network contains over 125 million patient records, and by the end of 2019 will include ~90% of the CTSA consortium. The extracted dataset indicates the number of patients who meet the established criteria at each medical center. Visit the UC Davis CTSC ACT Network to learn more about ACT and to register for access.
If you have questions or need assistance with ACT, send an email to email@example.com.
Data Request Process
De-identified data contains no PHI or HIPAA identifiers and can be used for hypothesis testing and sample size determination. Researchers can access de-identified data through self-service use of UC Davis Cohort Discovery (UC Davis Health EMR data) or the national Accrual to Clinical Trials Network (including UC Health aggregated data).
Figure 1. How to access de-identified data from the UC Davis EMR and the national Accrual to Clinical Trials (ACT) Network.
Identified data contains one or more HIPAA/PHI identifiers and requires regulatory approval to access it. The following elements are required to access identified data from UC medical records:
- Regulatory approval is required for access to all identified datasets.
- To develop or refine a research question before you have a protocol requires Preparatory to Research Application approval by the UC Davis Health Compliance Office. Data accessed for this purpose may NOT be used for study recruitment or for publication. The investigator serves as an “honest broker” for the data accessed (see Figure 2), OR
- Detailed data review or a cohort for prospective recruitment once you have a protocol requires UC Davis IRB approval. (UC Davis Health EMR data). The CTSC Informatics team serves as the “honest broker” for the data delivered (see Figure 3).
- Assistance from the CTSC Biomedical Informatics staff is required for access to all identified datasets.
Figure 2. How to access identified data from the UC Davis EMR without a protocol.
Figure 3. How to access identified data from the UC Davis Health and over 30 national CTSAs, including UC Health, with a protocol.