Researcher FAQs

Pre-Approval FAQs
​Q: Who should apply to use the LTC Data Cooperative?
A: Researchers who are conducting embedded pragmatic clinical trials, and comparative effectiveness studies are encouraged to apply. More information on research categories can be found in the catalogue here.

Q: I’m a researcher who is already partnering with some post-acute and long-term care facilities for research. Can I check if they are enrolled in the LTC Data Cooperative and encourage them to join if not?
A: Yes! We encourage researchers needing EHR data to contact us about enrolling their partnering sites to allow for more efficient data access. Please email us at LTCDataCooperative@AHCA.org to discuss.

Q: I have some questions before I submit my application and/or specific aims page. Could I speak to someone?
A: Yes! We are happy to set up a brief call to answer any questions and walk you through the process and available data. Please email us at LTCDataCooperative@AHCA.org to set up a call.

Q: When should I fill out an application to use the LTC Data Cooperative data?
A: After you have submitted a Specific Aims page and it has been approved, a representative from the LTC Data Cooperative team will email you with approval to submit an application.

Q: Who is on the LTC Data Cooperative Review Committee?
A: The review committee is comprised of representatives from participating LTC provider organizations, a researcher, the AHCA/NCAL Chief Medical Officer, and the data engineering firm’s Project Director. The current committee members can be found on our website here.

Q: What if I need input on my analytic plan before I submit to the IRB?
A: Please contact LTCDataCooperative@AHCA.org and a representative will assist you.

Q: What research projects are appropriate for use of the LTC Data Cooperative data?
A: In general, research that falls under one of the following key purposes: (1) observational, comparative effectiveness research; or (2) clinical research studies, including provider and patient recruitment into Phase 3 and Phase 4 randomized trials. For more detailed information and examples, please refer to the “Research Categories, Topics, & Examples” document under the downloads section of this page.

Q: What is meant by “comparative effectiveness research”?
A: Comparative effectiveness research is the generation and synthesis of evidence that compares the benefits and harms of alternative methods to prevent, diagnose, treat, and monitor a clinical condition or to improve the delivery of care. Its purpose is to assist consumers, clinicians, purchasers, and policy makers to make informed decisions that will improve health care at both the individual and population levels. In the case of the LTC Data Cooperative, analyses are likely to be cross-sectional or longitudinal analyses of the existing EMR data comparing patients who were or were not exposed to a particular treatment (drug, test or care regimen) or who were exposed to different treatments intended to address the same clinical condition.

Q: What is the cost to use the LTC Data Cooperative data?
A: The Long-Term Data Cooperative provides researchers only the data required to execute their research goals and aims as approved by their IRB. Standard Domain files are available at no cost to the researcher, while cohort customizations are completed at the cost of the researcher. Customization requirements are defined by the researcher (e.g., identification of diagnoses, medications, facility restriction). For more information, please refer to the document titled Cohort Customization Menu.

Q: What are the criteria that the Research Review Committee uses to evaluate applications?
A: The Research Review Committee evaluates proposals to ensure they meet the following criteria:
  • Alignment with mission of the LTC Data Cooperative
  • Uses data elements that are sufficient to accomplish study objectives
  • Proposal includes sufficient detail to assess feasibility to accomplish objectives
  • Investigators well-qualified to execute the study
  • Does not place unusually heavy burden on data-processing staff

Q: One component of the Plain Language Abstract is a description of “Provider Engagement.” What types of provider engagement does the LTC Data Cooperative recommend?
A: The LTC Data Cooperative recommends having a provider partner to help advise on a research study design, either formally or informally. For example, one of the members of the study team may be a clinician who is practicing or has practiced in a nursing center and is familiar with some ways a nursing center may use their EHR. Alternatively, staff at a local nursing center may be open to advising on how they might use a study’s findings. At minimum, researchers should commit to presenting on at least one Town Hall, which are held quarterly with LTC Data Cooperative provider participants, either prior to data analysis or once initial results are available.

Post-Approval FAQs
Q: Who should I contact with questions on data access, the enclave, or other technical questions?
A: Please contact LTCDC-Support@acumenllc.com.
 
Q: I need access to the CMS-EMR linked data via NIA Data LINKAGE –what do I do?
A: There is a separate DUA request process for NIA Data LINKAGE that will need to be completed after your application to the LTC Data Cooperative has been reviewed and approved. Once approval has been received from the LTC Data Cooperative, the PI will be directed to complete the LINKAGE DUA request process and forms found HERE.

Q: What should I do if my research objectives/proposal change from my initial application?
A: Please email LTCDataCooperative@AHCA.org if your research objectives change. Depending on the scope of the change and where you are in the application process, you may need to submit a new application or submit additional paperwork.

Q: Is there a publications review process for work utilizing data from the LTC Data Cooperative?
A: Yes, all publications (journal articles, reports, book chapters, etc.) must be submitted to LTCDataCooperative@AHCA.org prior to submission to a journal or third party. The pre-publication review is conducted for two reasons: First, to assure adherence to data confidentiality and cell sizes. Second, to assure that the manuscript aligns with the aims of the approved proposal and the approved Data Use Agreement. All publications must only present results that address the research objective(s) or research question(s) as stated in the plain-language abstract in the application, and not present results derived from LTC Data Cooperative data that address objectives or questions beyond those clearly statedand approved.

Final drafts should be sent via email sent to LTCDataCooperative@AHCA.org with the subject line, “Review Requested.” Allow ten business days for review. Expedited review is possible upon request. Additionally, upon Acceptance to a journal or third party, the final accepted manuscript and publication information should be sent via email to LTCDataCooperative@AHCA.org with the subject line, “Article Accepted.”

Q: Are there any expectations for researchers to share their analytic code?
A: Since this is a unique and new data source, we encourage researchers to voluntarily share their code and related files to assist other researchers in their work. A space on the virtual environment is available to share and access code that can support research - i.e. constructing new variables, summarizing events over time for a given person, identifying medication names consistently despite misspellings, creating new measures, etc. Additionally, the LTC Data Cooperative has a library under the Brown Digital Repository here, where researchers are encouraged to upload their published papers for other researchers to reference.

Q: How do I add new users to the enclave after the initial set-up?
A: Please contact LTCDataCooperative@AHCA.org and we will send you a user request form to complete. Studies accessing LINKAGE data may also require an amendment to the LINKAGE data use agreement (DUA).

Q: Can I update my specific aims after my application has been approved (for example, if I’ve discovered a promising new avenue of research after exploring the data)? 
A: Yes, please contact LTCDataCooperative@AHCA.org to discuss the proposed changes to your aims. Next steps will vary depending on how extensive the changes are.

Q: Who is eligible to access these data?
A: Users who are based in the United States and connected with an approved research project are able to access the data. The Data Custodian for each approved research project needs to be a U.S. citizen, but non-citizens can access the data as part of the Data Custodian’s team, as long as they are working from within the U.S.

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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