Researchers

​​​​​​​​​​​​​​​​​​Thank you for your interest in applying to the Long-Term Care (LTC) Data Cooperative.  

The LTC Data Cooperative is a provider-led initiative and collaboration with stakeholders in academia, government, and the private sector. The LTC Data Cooperative assembles residents’ EHRs from major specialty vendors and facilitates linkage of these data with Medicare claims to create a comprehensive, longitudinal patient record. These data serve 4 key purposes: (1) health care operations and population health analytics; (2) public health surveillance; (3) observational, comparative effectiveness research; and (4) clinical research studies, including provider and patient recruitment into Phase 3 and Phase 4 randomized trials. Federally funded researchers wanting to conduct pragmatic trials can enroll their partnering sites in this Cooperative to more easily access the clinical data needed to close the evidence gaps in long-term care.

​Information for Applicants

 ‭(Hidden)‬ Application Process & Timelines
The Principal Investigator will provide the following:

  • 1-Page Synopsis written in plain-language that summarizes the goals, and data analysis processes.
  • Completed Application using Standard Application Form for Prospective Researchers.
  • Institutional Review Board (IRB) and Privacy Board (PB) approval/determination.
  • Proof of Funding
  • Other necessary components for the type of research category requested.

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 Training & Events

Real World Data Scholars: An annual opportunity from the Long-Term Care Data Cooperative for scientists to become among the first users of these data and hone their skills in validation to improve electronic health records data for future use. For more information, please visit: https://impactcollaboratory.org/ltc-real-world-data-scholars-program. Please note the application period for 2023 is now closed. To be added to the list for next year's RFA announcement, please email​ RWDScholars@brown.edu  
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Town Halls: The LTC Data Cooperative team holds quarterly town hall meetings that bring together providers enrolled in the LTC Data Cooperative and researchers. Current and prospective researchers will have the opportunity to learn about funded projects, receive updates about the data cooperative's progress, and listen to provider feedback. Please email us to be added to these events!

The Upcoming Sessions are listed below:
  • Tuesday, February 13, 2024 1:00PM EST
  • Tuesday, May 14, 2024 1:00PM EST
  • Tuesday, August 13, 2024 1:00PM EST
  • Tuesday, November 19, 2024 1:00PM EST

 Application Process
  1. ​Upload a 1-page Specific Aims page here.
  2. A representative from the LTC Data Cooperative team will review the Specific Aims page and conduct a brief review to ensure that the proposed study aligns with approved research categories. Feedback will be given to researchers within two weeks.
  3. If the Specific Aims page is approved, researchers will be directed to submit an application here.

 Review Process
  1. ​Once received, applications will be reviewed administratively to ensure that all required materials have been submitted and that all necessary components were provided.
  2. If the project is not yet funded, the LTC Data Cooperative Review Committee will perform an initial review and provide a preliminary approval decision. Once funded, researchers must submit proof of funding and any additional required documents (IRB or privacy board approval, consent documents if applicable) to LTCDataCooperative@AHCA.org.
  3. If the project has already received funding (or once proof of funding is sent to the LTC Data Cooperative), the application will move onto an open public comment period.
  4. A review will be conducted by providers enrolled in the LTC Data Cooperative through an open public comment period. They will review the 1-page “plain-language” synopsis from each funded researcher application to assure proposals are consistent with the Data Use Agreement (DUA) permissions, and mission of the cooperative. This will help maintain trust with providers, which is critical to their continued participation.
  5. The LTC Data Cooperative Review Committee will make a recommendation based on the participant comment period responses to determine the final recommendation. The review committee is comprised of 6 long-term care industry experts including AHCA/NCAL Board Members, and the LTC Data Cooperative leadership committee.

Final decision will be shared with the Principal Investigator within 4-6 weeks from date of application submission.

If Application is recommended:
The LTC Data Cooperative Review Committee will notify Principal Investigator of recommendation, listing any outstanding materials and onboarding information, within 4-6 weeks from date of submission.

If Application is NOT recommended or more information is required:
The LTC Data Cooperative Review Committee will notify Principal Investigator of recommendation, providing a feedback report and rationale within 4-6 weeks from date of submission.

If Applicant is requesting access to CMS-EMR linked data:
If application has been approved, Project Investigator will receive an approval letter and information on how to apply to MedRIC to use the CMS-EMR linked data.

If Applicant has been denied:
If the application has been denied, the Project Investigator has a chance to appeal the decision. Please click here to access the appeals form.

​Approved Researchers

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Frequently Asked Questions

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 Apply Here
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 End User License Agreements

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

Q: How long does the application process take?
A: This process varies greatly depending on several factors, but on average we expect it to take two months. Please note if your project requires access to the CMS-EMR linked data on the MedRIC enclave, there will be an additional application process (please refer to the post-approval FAQs for more information).

Q: Who should I contact with questions on the application process?
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 6 long-term care industry experts including AHCA/NCAL Board Members, and the LTC Data Cooperative leadership committee. 

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.

 Post-Approval FAQs
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 application process for NIA Data LINKAGE that will need to be completed after you have completed your application to the LTC Data Cooperative and it has been reviewed and approved. Once approval has been received from the LTC Data Cooperative, the PI will receive a letter of approval which will need to be delivered to NIA Data LINKAGE to begin the application process. Their application process can be found here: https://www.nia.nih.gov/research/dbsr/access-or-share-linkage-data#access.
   
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: Who should I contact with questions regarding accessing the EMR data?
A: Please contact LTCDC@exponent.com with questions on EMR data access. We will do our best to respond within 2 business days.

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.”

 Data Research FAQs
​Q: What data are available through the LTC Data Cooperative?
A: Please refer to the technical use guide found here: https://www.ltcdatacooperative.org/Pages/Data.aspx

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/available-data for information on the available CMS datA:

Q: What is included in the standard service for access to the LTC Data Cooperative dataset?
A: Exponent will fulfill the following obligations as part of the standard service:
  • Grant access to LTC Data Cooperative Portal and provide setup and log-in instructions
  • Maintain secure cloud computing environment for data storage and analysis for up to 5 concurrent users
  • Load standard data elements into LTC Data Cooperative Portal (includes documentation and datasets relevant to approved protocol)
  • Provide up to 8 hours of support (includes written communications and meetings) related to accessing approved datasets
  • Perform regular monitoring, archiving, and security reviews, implementing updates where appropriate
Q: What is included in the LTC Data Cooperative Portal computing environment?
A: The standard service includes:
  • Windows Virtual Desktops (AWS WorkSpaces) for each user
    • 2 vCPU (virtual processor core equivalents)
    • 4 GB memory
  • Data warehouse (Amazon Redshift Serverless)
    • 400 GB storage
    • Scalable compute equivalent to 4000 queries/month at base capacity
  • Shared Windows filesystem
    • 1.25 TB storage
    • 8 MBps throughput
  • 100 GB Cloud Storage (Amazon S3)
  • Open-source software (RStudio, Anaconda, DBeaver, LibreOffice)
Q: What is not included in the LTC Data Cooperative Portal computing environment?
A: The environment configuration does not include:
  • Graphics processing units (GPUs)
  • Massively parallel processing services
  • Fee-based software, such as Stata or SAS
  • Additional training or customization services
Q: What is included in the LTC Data Cooperative dataset?
A: The LTC Data Cooperative dataset includes a range of information on residents, facilities, and more. For a full description of the dataset, see the LTC Data Cooperative Technical User Guide, available at the LTC Data Cooperative website.

Q: What is not included in the LTC Data Cooperative dataset?
A: The LTC Data Cooperative dataset does not include unstructured data or curated cohort definitions or variables, or any other elements not described in the Technical User Guide. 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 Resident Personally Identifiable Information (PII) and Protected Health Information (PHI), identifiable information about providers (e.g. name, NPI), or identifiable information about facilities (e.g. name, CCN), 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 PII, PHI, or other identifiable information at the provider or facility level?
A: Email ltcdatacooperative@ahca.org for details about required approvals and next steps.

Q: What are the dates of available data?
A: Availability of data varies by vendor, but overall, 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 Portal 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 Portal after a review process to ensure alignment with LTC Data Cooperative standards.