Systematic identification of family caregivers in health systems: Proposed solutions from a caregiver‐focused research study

Abstract: Patient electronic health records (EHR) were not built to identify family caregivers (hereafter “caregivers”). New policies such as the CARE1 and RAISE2 Acts pressure health systems to identify caregivers in a systematic way, yet few health systems include a caregiver field in their EHR. As such, caregiver identification relies on self-identification or providers asking patients about assistance in the home during health care encounters. Caregiver information, recorded as free text in EHR notes, is not easily extractable at a population level. Thus, current health system approaches hinder the ability to use caregiver expertise fully in the patient encounter and delay linking caregivers to services. Methods used in caregiver-focused research can inform future health system approaches to identify caregivers for engagement. We describe (1) a patient EHR driven approach using the Veterans Affairs (VA) EHR to identify Veterans with caregivers for a research survey (iHI-FIVES)5 and associated results; and (2) caregiver characteristics of survey participants from iHI-FIVES and CHASE,6 a national phone survey that recruited from a list of caregivers enrolled in the VA Caregiver Support Program (CSP). The goal of this comparison was to assess whether different recruitment methods allow the identification of similar types of caregivers. Similarities would indicate the iHI-FIVES EHR-driven approach identifies caregivers resembling those enrolled in services; dissimilarities may help identify groups to target for future enrollment in caregiver services.