Use of the patient portal among older adults with diagnosed dementia and their care partners

Abstract

INTRODUCTIONCare partners are at the forefront of dementia care, yet little is known about patient portal use in the context of dementia diagnosis.METHODSWe conducted an observational cohort study of date/time‐stamped patient portal use for a 5‐year period (October 3, 2017–October 2, 2022) at an academic health system. The cohort consisted of 3170 patients ages 65+ with diagnosed dementia with 2+ visits within 24 months. Message authorship was determined by manual review of 970 threads involving 3065 messages for 279 patients.RESULTSMost (71.20%) older adults with diagnosed dementia were registered portal users but far fewer (10.41%) had a registered care partner with shared access. Care partners authored most (612/970, 63.09%) message threads, overwhelmingly using patient identity credentials (271/279, 97.13%).DISCUSSIONThe patient portal is used by persons with dementia and their care partners. Organizational efforts that facilitate shared access may benefit the support of persons with dementia and their care partners.HIGHLIGHTS Patient portal registration and use has been increasing among persons with diagnosed dementia. Two thirds of secure messages from portal accounts of patients with diagnosed dementia were identified as being authored by care partners, primarily using patient login credentials. Care partners who accessed the patient portal using their own identity credentials through shared access demonstrate similar levels of activity to patients without dementia. Organizational initiatives should recognize and support the needs of persons with dementia and their care partners by encouraging awareness, registration, and use of proper identity credentials, including shared, or proxy, portal access.

Patient portal messages to support an age‐friendly health system for persons with dementia

“…Our analysis of patient portal messages of all older adults, and PLWD specifically, found that care partners actively send messages with content relevant for care partner identification, documentation, and support 6,7 . Our findings reinforce high nonpatient use of the patient portal which most often occurs with patient log‐on credentials.…”

“…Patient‐level demographic and health characteristics and portal use were extracted directly from the electronic health record. This study was approved by the local Institutional Review Board (IRB00303190) and the cohort is further described elsewhere 6,7 . Dementia diagnosis was operationalized following Grodstein 27 which requires two or more claims with dementia ICD‐10 codes at least 7 days apart, or one instance from a home health, hospice, rural health clinic, critical access hospital, or Federally Qualified Health Center (FQHC).…”

“…A care partner is a family member or other individual with a close relationship to the PLWD who comanages the effects of dementia 5 . PLWD and their care partners use the patient portal at rates similar to the broader patient population, 6 although care partners most often author portal messages 7 . Secure messaging volume increases following receipt of a dementia diagnosis, and commonly encompasses non‐acute concerns 8 .…”

Shared Access to Adults' Patient Portals: A Secret Shopper Exercise

“…using the patient's credentials. [7][8][9][10] Accessing patient records in this way, while convenient, can impact patient autonomy and can confuse clinicians who may not know with whom they are communicating. 7 Further, clinicians may not be confident that the care partner has the patient's permission to use the portal or communicate with the care team on their behalf.…”