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

Abstract

ImportanceFamily and other unpaid care partners may bridge accessibility challenges in interacting with the patient portal, but the extent and nature of this involvement is not well understood.ObjectiveTo inform an emerging research agenda directed at more purposeful inclusion of care partners within the context of digital health equity by (1) quantifying care partners’ uptake and use of the patient portal in adolescent and adult patients, (2) identifying factors involving care partners’ portal use across domains of the System Engineering Initiative for Patient Safety model, and (3) assessing evidence of perceived or actual outcomes of care partners’ portal use.Evidence ReviewFollowing Arksey and O’Malley’s methodologic framework, a scoping review of manuscripts published February 1 and March 22, 2022, was conducted by hand and a systematic search of PubMed, PsycInfo, Embase, and Web of Science. The search yielded 278 articles; 125 were selected for full-text review and 41 were included.FindingsFew adult patient portal accounts had 1 or more formally registered care partners (<3% in 7 of 7 articles), but care partners commonly used the portal (8 of 13 contributing articles reported >30% use). Care partners less often authored portal messages with their own identity credentials (<3% of portal messages in 3 of 3 articles) than with patient credentials (20%-60% of portal messages in 3 of 5 articles). Facilitators of care partner portal use included markers of patient vulnerability (13 articles), care partner characteristics (15 articles; being female, family, and competent in health system navigation), and task-based factors pertaining to ease of information access and care coordination. Environmental (26 articles) and process factors (19 articles, eg, organizational portal registration procedures, protection of privacy, and functionality) were identified as influential to care partner portal use, but findings were nuanced and precluded reporting on effects. Care partner portal use was identified as contributing to both patient and care partner insight into patient health (9 articles), activation (7 articles), continuity of care (8 articles), and convenience (6 articles).Conclusions and RelevanceIn this scoping review, care partners were found to be infrequently registered for the patient portal and more often engaged in portal use with patient identity credentials. Formally registering care partners for the portal was identified as conferring potential benefits for patients, care partners, and care quality.

The State-of-the-Art of Patient Portals: Adapting to External Factors, Addressing Barriers, and Innovating

“…The two transitions highlighted in our review were increased access to EHI among all patients and autonomous viewing of medical records during adolescence. Finally, similar to the findings from another recent review, 148 EHR vendors should develop mechanisms to prevent inappropriate account creation and access (i.e., caregivers of adolescents), 149 make it easier to create a formal proxy account, and offer patients more control over what formal proxies can access, as the existing research suggests that caregivers support patients in decoding their EHI (among many other tasks).…”

Catalyzing dementia care through the learning health system and consumer health information technology

“…Similarly, persons with ADRD are typically unable to navigate the patient portal, but little attention has been directed at proactively engaging with care partners who commonly do so on their behalf: a recent scoping review found less than 3% of registered portal users have "shared access" with care partners, who more often engaged in portal use with patient identity credentials. 48…”

“…For example, the time demands of electronic messaging pose a risk for compounding burnout among front‐line clinicians, while tempering enthusiasm for widespread use and innovation. Similarly, persons with ADRD are typically unable to navigate the patient portal, but little attention has been directed at proactively engaging with care partners who commonly do so on their behalf: a recent scoping review found less than 3% of registered portal users have “shared access” with care partners, who more often engaged in portal use with patient identity credentials 48 …”

Patient Portal Use Among Older Adults With Dementia Diagnosis

“…We found that older adults with dementia and their care partners relied on the information and functionality afforded by the patient portal. These results, in conjunction with gaps in dementia care quality and the importance of care partner engagement and support, have implications for modalities of systems-level dementia care initiatives that leverage the patient portal, including efforts to remedy the low uptake of shared-access or proxy portal registration . Additionally, the results highlight the need to better support all patients, including those who desire or rely on care partners, through consumer-oriented health information technologies.…”

“…5 Imputation of some price data produces unbiased expenditure estimates, but MEPS variance estimates do not account for imputation.Several states have established targets for insurers' share of primary care spending under the assumption that higher shares are better. 6 Because this share varies by characteristic, adjusting targets for some characteristics, such as age, may be needed, although having different targets for other characteristics, such as race and ethnicity, is problematic. Consensus on the ideal share of medical spending on primary care may be difficult to reach, but the large fraction of the population with no primary care spending, especially among uninsured individuals, seems likely to be suboptimal.…”