Patient Portals to Support Care Partner Engagement in Adolescent and Adult Populations

Key Points Question What is known about the frequency, nature, and consequences of care partners’ uptake and use of the patient portal? Findings This scoping review including 41 studies noted that few care partners are formally registered for the patient portal but that informal portal use, with patient identity credentials, is common. Patients and care partners identified the need for and potential benefits of care partner engagement in the patient portal. Meaning The findings of this scoping review suggest that health care systems have directed limited effort toward engaging care partners in the patient portal, despite identified potential benefits.


eTable 1. Search Strategy
We applied the following search strategy to PubMed, Web of Science, Embase, and PsychInfo:

Search Concept
Search line number Search strategy Care partner 1 "Caregivers"[MeSH Terms] 2 "Caregiver*" ti,ab,kw,kf 3 "Care Giver" ti,ab,kw,kf 4 "Spouse Caregiver*" ti,ab,kw,kf 5 "delegate*" ti,ab,kw,kf 6 "surrogate*" ti,ab,kw,kf 7 "parent child relations" [ Age Data indicating patient age as a factor affecting care partner uptake/use of patient portal "There was no difference in mean age between patients who had messages apparently sent by proxies through patient portal accounts versus proxy portal accounts." Gender Data indicating patient gender as a factor affecting care partner uptake/use of patient portal "Patients who had proxies send messages through patient accounts were more likely to be married and male compared with patients whose proxies used proxy accounts to send message." Need for asisstance Data indicating patient's need for assistance (english proficiency, comfort with technology) as a factor affecting care partner uptake/use of patient portal "Patients with a higher % of proxy-sent messages had higher rates of limited English proficiency (16.1% vs 3.2% vs 3.5%, p<0.05)"

Illness severity
Data indicating patient illness severity as a factor affecting care partner uptake/use of patient portal "Caring for a patient with a chronic condition was associated with greater odds of portal use for caregiving (OR: 1.66, P = 0.022)."

Mental Health condition
Data indicating patient's mental health condition as a factor affecting care partner uptake/use of patient portal "Caring for a patient with a mental health condition was associated with greater odds of portal use for caregiving (OR: 1.71, P = 0.013)." Race Data indicating patient race as a factor affecting care partner uptake/use of patient portal "patients predicted as having high percent PPSMs [predicted proxy secure messaging] were … more likely to be … non-white (80.7% vs 66.8% vs 72.4%, p < 0.05)"

Work System Factors (Person -Care Partner)
Gender Data indicating care partner's gender as a factor affecting portal uptake/use "Being female (OR 2.58, 95% CI 1.40-4.75; P=.002) was associated with a significantly higher likelihood of using their care recipient's portal"

Race
Data indicating care partner's race as a factor affecting portal uptake/use "care recipient portals were more likely to be accessed by White caregivers"

Relationship to patient
Data indicating care partner's relationship to patient as a factor affecting care partner uptake/use of the patient portal "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)."

Health literacy level/ education
Data indicating care partner's health literacy level/ education level as a factor affecting care partner uptake/use of the patient portal "for most tasks, a higher percentage of patients than caregivers required assistance from staff in order to complete the task… Explaining medical terms was the most commonly cited wish."

Technology experience
Data indicating care partner's technology experience as a factor affecting care partner uptake/use of the patient portal "Care partners were more likely than patients to report using the Internet daily (87.6% versus 55.0%, P<.001) and using a computer to perform health management activities (95.5% and 48.4%, P<.001)"

Household income
Data indicating care partner's household income as a factor affecting care partner uptake/use of the patient portal "Care partners who logged into MyChart were more likely to… have worked in the last week (70.0% vs 42.4%; p=0.03) than care partners who did not." Illness/ Illness severity Data indicating care partner's illness/ illness severity as a factor affecting care partner uptake/use of the patient portal "Having a chronic health condition was associated with greater odds of portal use for self-care (OR: 1.33, P < 0.001) but not for caregiving."

Mental Health condition
Data indicating care partner's mental health condition as a factor affecting care partner uptake/use of the patient portal "Having a mental health condition was associated with greater odds of portal use for self-care (OR: 1.23, P = 0.01) but reduced odds of portal use for caregiving (OR: 0.61, P = 0.03)."

Clinical-site factors
Data indicating factors at the clinical site (organizational, technical or policy, or lack of clinician/staff awareness of proxy access) limiting availability of proxy access "7% of personnel did not know about proxy accounts, 45% endorsed passwordsharing for caregivers to the primary portal account" Location/setting Data indicating location or setting (of healthcare delivery or of patient/care partner use of the portal) as a factor affecting care partner use/uptake of the patient portal 68% of hospitals offered proxy accounts to caregivers Internet access Data indicating care partner's internet access as a factor affecting care partner use/uptake of the patient portal internet access is less available in rural settings, variable in low-income urban areas

Work System Factors (Tasks)
Access to information Data indicating information types accessed by care partners (lab results, visit notes, patient health status details) as a factor affecting care partner uptake/use of the patient portal "Care partners read visit notes more frequently than patients. 98% or care partners indicated that 'making visit notes avilable on the electronic portal was a good idea.' "

Coordination of care
Data indicating patient portal functionality accessed by care partners (messaging, appointment scheduling, filling prescriptions) as a factor affecting care partner uptake/use of the patient portal "Patients indicated that they shared access to their patient portal account to facilitate involvement of care partners in managing healthcare activities (41.9%)"

Privacy and security
Data indicating that privacy and security as a factor affecting care partner uptake/use of the patient portal

% of respondents indicated no concerns about privacy and confidentiality
Review of proxy access status Data indicating the patient's ability to control proxy access as a factor affecting care partner uptake/use of the patient portal Patients desired graduated access rights so patients could determine more limited access in some cases; caregivers were in favor of broader access

Convenience of access type
Data indicating ease in establishing proxy access as factor affecting care partner uptake/use of the patient portal Care partners preferred accessing the patient portal through the patient's account because it was more convenient than proxy

Insight into Patient Health and Personhood
Data indicating that care partner access to patient information through the patient portal enables or facilitates patients and care partners to be involved in its application and in ensuring its accuracy and comprehensiveness.
"One of the main reasons participants felt caregiver access was beneficial was in the caregiver's ability to help them understand the information on the portal, such as doctor's messages and test results."

Activation of Information
Data indicating that care partner use of the patient portal increases the effectiveness and targetability of information "Among those using the portal as a care partner, 94.2% reported that it was more convenient than other ways of participating in another person's health care."