Family Caregiver Access of Online Medical Records: Findings from the Health Information National Trends Survey
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J Gen Intern Med DOI: 10.1007/s11606-020-06350-8 © Society of General Internal Medicine 2020
INTRODUCTION
Over 40 million Americans provide unpaid support to an adult relative for tasks including accompanying them to doctor visits and/or supporting them in medical decisions.1 Over the past several years—and particularly amid COVID-19—there has been increasing interest and demand for caregivers to be more involved in communication with providers to support patient engagement and patient-centered care as evidenced by recent state and federal policy initiatives to expand support to caregivers.2,3 One way to improve communication between caregivers and providers is through an online medical record (patient portal), which enables patients to acquire important health information and communicate with medical providers.4 However, caregivers’ access to adult care recipients’ portals is limited and varies across healthcare organizations and states.2 The objective of this study was to determine the relationship between socio-demographic attributes and responsibilities of caregivers and likelihood of (a) communicating with recipients’ providers and (b) accessing recipients’ online records.
We first examined socio-demographic attributes and responsibilities of caregivers. We estimated multivariable logistic regression models to investigate relationships between care recipient type and (1) responsibility for communicating with providers and (2) accessing care recipient’s online medical records. Models adjusted for age, race/ethnicity, sex, education, activities of daily living support, cognitive condition support, proximity to care recipient, and hours spent caregiving.
RESULTS
The majority of family caregivers of adults (74–89%) report responsibility for communicating with care recipients’ healthcare providers (Table 1). However, only 11– 27% of caregivers accessed their care recipients’ online medical record in the previous 12 months, with caregivers of spouses most likely to access care recipient’s online record. In multivariable analysis (Table 2), caregivers of a parent were significantly less likely than caregivers of spouses to report being responsible for communicating with providers (OR = 4.34, p = 0.003). Similarly, caregivers supporting a parent were significantly less likely than those supporting a spouse/partner to report using the online medical record (OR = 0.28, p = 0.01).
DISCUSSION METHODS
We performed a secondary analysis of data from the National Cancer Institute’s nationally representative 2018 Health Information National Trends Survey (HINTS) 5 Cycle 2, administered to 3504 US adults between January and May 2018. Our final analytic sample included 191 self-identified family caregivers of adults supporting the following: (a) a spouse/partner (n = 51), (b) a parent/parents (n = 101), or (c) another family member (n = 39). Received June 30, 2020 Revised August 11, 2020 Accepted November 16, 2020
Most family caregivers are responsible for communicating with healthcare providers for their adult care reci
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