Researchers

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

The LTC Data Cooperative is a novel data resource that assembles skilled nursing facility and assisted living community electronic health record (EHR) data for research, public health surveillance, and to support clinical operations in post-acute and long-term care facilities. This long-term care provider-led effort, funded by the National Institute on Aging (NIA), welcomes proposals for two types of research:

  • 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
  • Clinical research studies that test and evaluate interventions in post-acute and long-term care facilities, such as pragmatic trials.

Please note that because of the unique nature of this initiative and these data, the application process involves review and input from LTC providers who participate in the LTC Data Cooperative. For approved research studies, electronic health record (EHR) data can be linked with Medicare claims and other data from the Centers for Medicare & Medicaid Services (CMS) at no cost via the NIA Data LINKAGE Program.

Interested in receiving the latest insights and news from the LTC Data Cooperative? Email LTCDataCooperative@AHCA.org to subscribe to our Research Bulletin, which comes out approximately every other month.

Eligibility to Use the LTC Data Cooperative Data

PI Eligibility

Principal Investigators must meet ALL of the following requirements:
  • U.S.-based investigator affiliated with U.S. institutions including governments, federal institutions, institutions of higher education, other non-profit organizations, and healthcare systems; and
  • U.S. citizen or permanent U.S. Resident; and
  • Listed as the PI on the relevant IRB documents; and
  • In accordance with the NIA Data LINKAG​E Program's researcher guidelines.
Non-citizens and non-investigators (e.g., Analysts, students, individuals with post-doctoral positions) can access the data as part of the team, as long as they are working from within the U.S.

Project Eligibility

Research projects are screened for eligibility and feasibility in step one of the application review process. Eligible research projects must:
  • Fall under one of the two approved categories of research (observational comparative effectiveness or clinical trials research); and
  • Describe how the study requires use of available EHR data from the LTC Data Cooperative, above and beyond data available from other existing sources.

IRB Eligibility

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.​

Research Examples

The mission of the LTC Data Cooperative is to improve the quality of care within post-acute and long-term care facilities by compiling the most comprehensive data on post-acute and long-term care residents nationwide – and to translate these data into accessible and actionable information designed to help clinicians, managers and policy makers improve care.

We encourage applications that focus on generating findings that will influence care practices and policy.

See this page for a summary of some of the research proposals that have been approved to use the LTC Data Cooperative. 

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Visit our Application Page for more information.

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