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?
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: Can I receive additional training on the LINKAGE enclave?