Johns Hopkins School of Nursing
Developing a Measure of Unrepresented Status Among Nursing Home Residents with Dementia
Real World Data Source
LTC Data Cooperative
Dr. Pomeroy is a research associate and health services researcher in the Center for Equity in Aging at the Johns
Hopkins School of Nursing. Her research focuses on how social isolation shapes healthcare use, aging in place,
and outcomes among older adults with dementia, with a growing emphasis on unrepresented patients. She has
extensive experience using large-scale, population-based datasets, including the National Health and Aging
Trends Study and the Health and Retirement Study. Her work aims to develop policy-relevant measures and
pragmatic, real-world data approaches to improve care delivery, strengthen social support, and promote aging
with dignity among older adults with chronic illness and complex social needs.
Nearly half of nursing home residents live with dementia, a population in which social isolation, limited
caregiving support, and impaired decisional capacity may leave some individuals without a surrogate or
advance directives during critical medical decisions. These “unrepresented” patients face substantial clinical
and ethical risks yet remain poorly characterized in national data due to the absence of validated, scalable
measures. This project will leverage nursing home electronic health record (EHR) data to develop a datadriven
measure of unrepresented status, generating population-level estimates, and laying the groundwork for
future clinical, policy, and pragmatic research. This award will provide Dr. Pomeroy with training and
experience using linked EHR and Medicare data to: (1) Develop a pragmatic measure of unrepresented status
and (2) Generate population estimates of unrepresented nursing home residents with dementia. This project
will establish a scalable, EHR-based approach to identifying unrepresented status among nursing home
residents with dementia, addressing a critical gap in detecting residents who lack decisional support. These
findings will inform future validation efforts, pragmatic trial design, and clinical and policy strategies to
improve decision-making and end-of-life care for this high-risk population. This work will establish the
foundation for leveraging real-world data to improve care for socially isolated and unrepresented older adults
with dementia.