Using Real-World Data to Improve Long-Term Care Research

Long-term care residents are underrepresented in clinical research, limiting the evidence available to inform care decisions. A new study by Exponent's Catherine Rogers Murray, Dustin Burns, David Dore, and coauthors highlights how the Long-Term Care (LTC) Data Cooperative, a national research resource that aggregates deidentified electronic health record data from participating skilled nursing facilities, helps generate more actionable evidence for older adults with complex medical conditions living in these settings.

Published in the Journal of the American Geriatrics Society, the article, "Characteristics of the Long-Term Care Data Cooperative: A New Resource for Research on Outcomes in Long-Term Care," discusses the LTC Data Cooperative's resident and facility populations and assesses the breadth and completeness of the clinical information available to support research.

The study found that residents in the LTC Data Cooperative are broadly comparable to the national nursing home population, with only modest demographic and clinical differences. Participating facilities also consistently captured key clinical measures such as vital signs, medication administration records, blood glucose readings, and immunizations — data often unavailable in claims or assessment datasets.

Collectively, these results demonstrate the LTC Data Cooperative's potential to support observational studies, comparative-effectiveness research, public health surveillance, randomized trials, and other efforts to improve long-term care outcomes.

This work goes beyond normalizing data so that disparate data sets are simultaneously computable. It requires expertise in healthcare systems, coding and billing workflows, validity of the resulting data, and data privacy and security. The team at Exponent brought this varying expertise, and more, to the LTC Data Cooperative creating a top-tier public health resource that enables users to fulfill obligations related to health care operations, public health surveillance, and comparative effectiveness research. 

From the publication: "The LTC Data Cooperative provides researchers with a rich platform from which to answer innovative questions that were, until now, left uninvestigated."