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Editor’s note: The authors are grateful for important contributions to this post from their colleagues with the Long-Term Care Data Cooperative
Millions of older adults in the United States live in long-term care settings such as nursing homes or assisted living facilities. These settings yield a wealth of valuable data that researchers can use to improve care quality; however, the information is often fragmented and tough to access. Fortunately, there is an NIA-funded resource that can help: the Long-Term Care Data Cooperative (LTCDC).
A rich data resource for quality care in long-term settings
Resources such as the Centers for Medicare and Medicaid Services Minimum Data Set and Medicare claims data offer researchers some insight into diagnoses, conditions, and their impact on health care utilization. However, overall, it can be difficult for scientists to access data on vital signs, medication administrations, and clinical assessments. Clinical trials designed to test therapeutic and lifestyle interventions are often conducted in younger, healthier populations or individuals, resulting in findings that can be difficult to translate to older adults in long-term care settings who often have multiple complex chronic conditions.
The Long-Term Care Data Cooperative (LTCDC) is a valuable resource for overcoming these challenges. With data on nearly 2 million individuals, it is the largest integrated source of detailed U.S. electronic health record (EHR) information from long-term care settings. All LTCDC data are anonymized to protect patient privacy and in compliance with federal law.
The LTCDC includes data from EHR vendors, more than 100 long-term care organizations, and over 2,100 skilled nursing facilities. It covers multiple topics, including:
- Resident demographics and time in and out of the facility
- Diagnoses
- Medications, vitals, and labs
- Vaccinations (including COVID)
- Advanced directives
Notably, EHR data are linked to Medicare claims via the NIA LINKAGE Program .
Researchers can use the LTCDC to conduct studies on the comparative effectiveness of treatments, care practices, or preventive care or to investigate other topics such as antibiotic stewardship, chronic disease management, and injury and hospitalization prevention. LTCDC data can also make it much faster and easier for researchers to identify potential study and clinical trial sites involving older adults in long-term care settings.
A growing number of scientists using the LTCDC
Several NIA-funded researchers are already using the LTCDC. For example, for the national network Nursing Home EXplanatory Clinical Trials: Supporting Transformation by Enhancing Partnerships, investigators plan to use the data to identify and reduce barriers to nursing home resident participation in clinical trials. The LTCDC is also being used for projects designed to examine medication use, such as the hazards of prescribing cascades — when a new medication is mistakenly prescribed to treat the side effects caused by another medication.
How to get started
Researchers conducting embedded pragmatic clinical trials, public health surveillance, and comparative effectiveness studies are encouraged to apply for the use of LTCDC data. To get started, visit the LTCDC website , upload your aims, and submit an application.
If you’re attending the 2024 Gerontological Society of America’s Annual Scientific Meeting , you can also learn more at our workshop , The Long-Term Data Cooperative: Furthering Research With Nursing Home Electronic Health Records, which will take place Saturday, Nov. 16, 8 a.m.-noon PT. Participants will discover how the LTCDC is generating real-world evidence on treatments and care practices, have a chance to explore sample data, and learn how to request access for research.
We’d be happy to discuss research ideas or help answer your data-related questions: Email ltcdatacooperative@ahca.org or leave a comment below.
Clinical Research Data Sharing Scientific Resources 2024-11-06T00:00:00Z