NIA AD/ADRD Health Care Systems Research Collaboratory

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ABSTRACT The Coronavirus Disease 2019 (COVID) pandemic has disproportionately affected long-term care residents in the US, who currently represent 7% of cases nationwide, but 40% of deaths. As of late November, over 100,000 residents have died, but incomplete data means these are undercounts. Skilled nursing facilities (SNFs) provide a mix of post-acute and long-term care to medically-complex older adults, about 70% of whom have Alzheimer’s Disease and Related Dementias (ADRD) and are particularly vulnerable to SARS-CoV-2. SARS-CoV-2 represents the most serious challenge to SNFs in decades because of its lethality and ease of transmission, especially by asymptomatic carriers. A major barrier to developing appropriate clinical and operational responses to mitigate the pandemic’s effects is the lack of comprehensive data. While the Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC) created data reporting systems, these facility-level data are insufficient to understand which residents acquire COVID or resident-level clinical outcomes. The current surveillance data offer no insight into predictors of mortality or whether these predictors have changed as the case fatality has declined since Spring of 2020.To truly understand the national impact of COVID (and similar future public health threats), a much larger, richer, and nationally representative database of SNFs is needed. This database is particularly important since residents will be vaccinated for COVID with little information on adverse effects that frail older adults may experience at higher rates or greater severity than the populations that were included in the clinical trials for these vaccines . Working with the American Health Care Association (AHCA) and two technology partners, this supplement to the IMPACT Collaboratory [U54 AG063546] will: 1) assemble an integrated database of detailed, electronic medical records data from some 10,000 US nursing homes and then merge these records with Medicare claims, creating a regularly updated data infrastructure to address clinical and policy questions pertaining to COVID (but which could apply to future conditions) such as: 2) What is the cumulative incidence of COVID among racial minorities and residents with ADRD?; 3) What influence do demographic, clinical, organizational, and regional factors have on nursing home residents’ risk of morbidity and mortality from COVID?; 4) Which nursing home residents are vaccinated against COVID and are those with ADRD and/or minorities less likely to be vaccinated?; and 5) Have the rates of physical and cognitive functional decline increased between 2019 and 2020 among residents living with ADRD, independent of COVID infection? This data infrastructure will revolutionize the rapid monitoring of nursing home trends in new infections and treatments and create a large, detailed database for quantifying the direct and indirect effects of federal and state policy changes.