Researchers

​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.

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.

A: Please reach out to LTCDataCooperative@ahca.org

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: I need a letter of support to send to my funding entity. How do I obtain one from the LTC Data Cooperative and how long will it take?
A: Please still follow the application steps (submit a Specific Aims page and then an application) - there is a section of the application that asks whether a letter of support is needed. From the point of application submission, researchers can expect to receive a letter of support within 4-6 weeks.

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: Standard access is free. Additional services and data, including clinical trials, may incur additional costs that researchers must budget for in their proposals. For more information, including a definition of  standard access, please refer to the document titled “Cost to Access  LTC Data Cooperative EHR Data” under the downloads section of this page.

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: What researchers are eligible to apply to the LTC Data Cooperative?

Q: Now that my research proposal has been approved, what happens next?   
A: The appropriate person at your organization signs the LTC Data Cooperative Data Use Agreement (DUA) and returns it to the recipient specified in the DUA instructions. Once the signed DUA has been received and reviewed for completeness, an email with instructions on how to access the data environment will be sent to you within 1-2 weeks.   
 
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: 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: When can I get started?    
A: You may begin analysis after successfully accessing the environment and having the requested data revealed to you. Standard data extracts will generally be available within one week. Custom data cuts may take longer.   

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 share their code and related files to assist other researchers in their work. The LTC Data Cooperative has a library under the Brown Digital Repository here, where researchers can upload their code, published papers, and files for other researchers to reference.

A: Please refer to the technical use guide found here: https://www.ltcdatacooperative.org/Pages/Data.aspx

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.

A: Please visit NIA Data LINKAGE’s program website at: https://www.nia.nih.gov/research/dbsr/available-data for information on the available CMS datA: