Data FAQs

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 Data Research FAQs

Q: What data are available through the LTC Data Cooperative?
A: Please refer to the LTC Data Cooperative Technical User Guide found here.

Q: How often are data updated?
A: CMS and EHR data are updated on a quarterly basis. Clinical trials may also request EHR data updated on a monthly basis.

Q: Once a provider organization joins, how much retrospective data may be available to researchers?
A: We generally see the most comprehensive data from January 2019 onward. However, there is some facility-by-facility variation that may depend on when the facility implemented their EHR, and also some variation in how complete older data may be.

Q: What is not included in the LTC Data Cooperative dataset?
A: The LTC Data Cooperative dataset does not include unstructured nursing notes, structured nursing notes, non-medication orders (e.g., for nutrition, therapy, wound care), PDF documents (e.g., hospital discharge records, radiology or lab results), daily ADL documentation done by CNAs, or care plan documentation. For access to data elements beyond the standard dataset or creation of custom cohorts or outcome data, researchers may request a quote for supplemental data element creation.

The dataset does not include name or medical record identifiers. Resident date of birth (rather than just year), identifiable information about providers (e.g. name, NPI), or identifiable information about facilities (e.g. name, CCN), are not available unless approved by the LTC Data Cooperative, the researcher’s funding body, and an applicable research oversight entity (i.e., institutional review board, privacy board).

Q: How should I proceed if my study requires identifiable information at the provider or facility level?
A: Email LTCDataCooperative@AHCA.org for details about required approvals and next steps.

Q: I’m interested in the CMS-EMR linked data via NIA Data LINKAGE. What data are available? 
A: Please visit NIA Data LINKAGE’s program website at: https://www.nia.nih.gov/research/dbsr/nia-data-linkage-program-linkage/available-data  for information on the available CMS data.

Q: What are the dates of available EHR data?
A: EHR data are available from January 2019 onward.

Q: How long is access granted to the LTC Data Cooperative dataset?
A: Data access is granted in 12-month increments, which coincides with the date data access is granted, plus 12 calendar months or the conclusion of the study

Q: Are electronic health record data available in real-time?
A: The availability of electronic health record data varies by vendor and data lag times can range from about 1 to 6 months.

Q: Are claims data available in real-time?
A: As a result of our data ingestion and linkage processes, we expect there to be a six-month lag between the electronic health records and their corresponding claims.

Q: Can researchers download LTC Data Cooperative dataset data?
A: No, the data remains in the virtual computing environment (Enclave) to ensure compliance with the LTC Data Cooperative’s privacy and security standards.

Q: Can researchers export code and results deriving from data analysis?
A: Analytic code and aggregate results can be downloaded after a review and approval process confirming no PHI/PII or patient-level data are present in the requested export.

Q: Can researchers upload their own data or code to the LTC Data Cooperative Portal?
A: Additional data sources and prewritten code can be uploaded to the virtual computing environment (Enclave) after a review process to ensure alignment with LTC Data Cooperative standards.

Q: Do I need to download any software to access the data?   
A: Data environment access is granted through a web browser; common analysis software is pre-installed in the environment. Additionally, a desktop client for PC or Mac can be downloaded to access the environment.  

Q: What analytic software is available?
A: SPSS is not available in the virtual environment; SAS, Stata, and R are available in the virtual environment.

Q: Can I request a software package?
A: Please reach out to LTCDC-Support@acumenllc.com to request a software package be added to the enclave.

Q: What if I see something in the data that I have questions on or don’t expect?
A: Please contact us at LTCDC-Support@acumenllc.com.

Q: Can I receive additional training on the LINKAGE enclave?
A: Yes! LINKAGE hosts virtual researcher bootcamps regularly. For a schedule and to register, please email support@linkagesupport.zendesk.com.
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