The Long-Term Care Data Cooperative: The Next Generation of Data Integration

Area of Science:

• Gerontology
• Health Informatics
• Public Health

Background:

• Long-term care data infrastructure is insufficient for public health surveillance and clinical research, leading to older nursing home residents' exclusion from clinical trials.
• The COVID-19 pandemic highlighted critical data gaps in nursing home surveillance and research.
• Electronic health records (EHRs) offer more timely and detailed clinical information compared to Medicare claims and Minimum Data Set (MDS) data.

Purpose of the Study:

• To address the data limitations in long-term care by establishing a comprehensive data infrastructure.
• To facilitate clinical research and public health surveillance for the nursing home population.
• To create a longitudinal patient record by linking EHRs with Medicare claims.

Main Methods:

• The National Institute on Aging funded the Long-Term Care (LTC) Data Cooperative, a collaborative effort involving providers, academia, government, and private sector stakeholders.
• The Cooperative assembles residents' EHRs from major specialty vendors.
• EHR data is linked with Medicare claims to create a comprehensive, longitudinal patient record.

Main Results:

• As of August 2022, nearly 1000 nursing homes have joined the LTC Data Cooperative.
• Pilot programs for facility feedback reports and infection-identifying algorithms are underway.
• Data use proposals have been reviewed and approved, indicating progress in data utilization.

Conclusions:

• The LTC Data Cooperative represents a significant innovation in the richness and timeliness of nursing home data infrastructure.
• This initiative enables improved health care operations, population health analytics, public health surveillance, and observational/clinical research.
• Federally funded researchers can now more easily access clinical data for pragmatic trials, helping to close evidence gaps in long-term care.