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.