Caregivers in a Haystack? Informatics‐Driven Clinical Trial Enrollment of Dementia Caregivers at Medical Visits

Abstract

BACKGROUND: Caregiving status is not routinely documented during clinical care, rendering caregivers difficult to identify for research and supportive interventions. We describe two informatics-based strategies for identifying dementia caregivers at their own or their care recipient's point of care (POC). METHODS: The CommunityRx-Dementia trial was conducted at a U.S. urban academic medical center serving a predominantly Black population. Eligible participants were caregivers of a patient with dementia recruited mainly by: (1) fee-based queries of the clinical research data warehouse (CRDW) that identified patients with dementia and their listed contacts (potential caregivers) (August 2020-November 2022) or (2) no-cost self-service query using an electronic health record (EHR)-integrated cohort discovery tool that identified patients with dementia (June 2020). For CRDW lists, probabilistic matching was used to identify contacts who were also patients at the study site. An EHR dashboard displayed medical visits of patients with dementia (identified from both strategies) and their contacts (from CRDW only) to recruit at the POC. RESULTS: A recruitment list of 8185 patients with dementia was created: 6282 from five CRDW queries and 1883 from one self-service EHR query, 20 from self- and clinician referrals. Target enrollment (N = 344) was reached in 27 months; 321 caregivers from CRDW contacts, 19 from self-service query contacts, 4 from clinician referrals. Enrollment rates were 66% (321/488) of eligible caregivers from CRDW and 48% (19/40) from self-service query. Seventeen percent of all enrolled caregivers were recruited from their own visit (28% internal medicine, 11% ophthalmology, 9% geriatrics, 5% hematology/oncology, 47% all other eligible clinics). CONCLUSIONS: A large dementia caregiver trial achieved recruitment goals using two replicable informatics-based strategies. The CRDW strategy involved no manual EHR abstraction and enabled direct recruitment of dementia caregivers at their own medical visits at relatively low cost.