Researcher FAQs

Pre-Approval FAQs
​Q: Who is eligible to apply to use these data?
A: Please refer to our website here for the most up to date eligibility requirements for PIs.

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. Could I speak to someone?
A: Yes! We encourage you to attend our researcher office hours, listed on our Training & Events page.

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: We welcome proposals for two types of research:
1. Observational comparative effectiveness studies, which compare outcomes for residents 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, and
2. Clinical research studies that test and evaluate interventions in post-acute and long-term care facilities, such as pragmatic trials.

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: Standard data access is available at no cost to the researcher. This is the level of access that most observational studies will require. Cohort customizations are completed at the cost of the researcher and are defined by the researcher (e.g., identification of diagnoses, medications, facility restriction). For more information, including a full definition of standard data access, please refer to the document titled Cost of Additional Services.

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.
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Post-Approval FAQs
Q: What type of IRB determination is required to access Long-Term Care Data Cooperative data?
A: Prior to data access, researchers must submit an eligible Institutional Review Board (IRB) determination letter and protocol (that covers the aims of the approved study) to LTCDataCooperative@AHCA.org. Eligible determinations meet the following requirements: 
  • We accept determinations of exempt research or non-exempt research approved through full IRB review. Both must include a waiver of informed consent and a waiver of HIPAA authorization. We cannot accept an IRB determination of “not human subjects research.”
  • IRB documentation must be in accordance with the CMS requirements listed here​.
  • We also recommend that IRB approvals encompass all years of data requested, including future years of data that may become available, to avoid the need for repeated IRB amendments.

We cannot accept an IRB determination of “not human subjects research.” We also recommend that IRB approvals encompass all years of data requested, including future years of data that may become available, to avoid the need for repeated IRB amendments.

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, please refer to our Publication Policy here​.

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).

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​Data FAQs - Click Here

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