Secure Messaging with Physicians by Proxies for Patients with Diabetes: Findings from the ECLIPPSE Study

Abstract

BACKGROUND: Little is known about patients who have caregiver proxies communicate with healthcare providers via portal secure messaging (SM). Since proxy portal use is often informal (e.g., sharing patient accounts), novel methods are needed to estimate the prevalence of proxyauthored SMs. OBJECTIVE: (1) Develop an algorithm to identify proxyauthored SMs, (2) apply this algorithm to estimate predicted proxy SM (PPSM) prevalence among patients with diabetes, and (3) explore patient characteristics associated with having PPSMs. DESIGN: Retrospective cohort study. PARTICIPANTS: We examined 9856 patients from Diabetes Study of Northern California (DISTANCE) who sent ≥ 1 English-language SM to their primary care physician between July 1, 2006, and Dec. 31, 2015. MAIN MEASURES: Using computational linguistics, we developed ProxyID, an algorithm that identifies phrases frequently found in registered proxy SMs. ProxyID was validated against blinded expert categorization of proxy status among an SM sample, then applied to identify PPSM prevalence across patients. We examined patients' sociodemographic and clinical characteristics according to PPSM penetrance, "none" (0%), "low" (≥ 0-50%), and "high" (≥ 50-100%). KEY RESULTS: Only 2.3% of patients had ≥ 1 registered proxy-authored SM. ProxyID demonstrated moderate agreement with expert classification (Κ = 0.58); 45.7% of patients had PPSMs (40.2% low and 5.5% high). Patients with high percent PPSMs were older than those with low percent and no PPSMs (66.5 vs 57.4 vs 56.2 years, p < 0.001) had higher rates of limited English proficiency (16.1% vs 3.2% vs 3.5%, p < 0.05), lower self-reported health literacy (3.83 vs 4.43 vs 4.44, p < 0.001), and more comorbidities (Charlson index 3.78 vs 2.35 vs 2.18, p < 0.001). CONCLUSIONS: Among patients with diabetes, informal proxy SM use is more common than registered use and prevalent among socially and medically vulnerable patients. Future research should explore whether proxy portal use improves patient and/or caregiver outcomes and consider policies that integrate caregivers in portal communication.

Precision communication: Physicians’ linguistic adaptation to patients’ health literacy

“…For the current analyses, only those SMs sent between patients and primary care physicians were included. We excluded all SMs from patients who did not have matching DISTANCE survey data, were written in a language other than English, and were written by proxy caregivers ( 61 ). The total patient sample in the ECLIPPSE Study was N = 9530; the total physician sample was N = 1165.…”

Evaluation of Family Caregivers’ Use of Their Adult Care Recipient’s Patient Portal From the 2019 Health Information National Trends Survey: Secondary Analysis

“…Previous studies characterizing the use of the patient portal suggest that low engagement with the patient portal for certain populations, such as older adults, could be attributed to technology barriers or to the possibility that family caregivers are using the patient portal on their behalf [6,7]. Although some caregivers have formal proxy access to their care recipient's portal (with estimates at less than 5%), some literature suggests that 25% to 50% of proxies informally use their care recipient's portal [13][14][15]. By offering caregivers log-in credentials for informal proxy access, patients may share more health information than intended or desired [16].…”

Validity of a Computational Linguistics-Derived Automated Health Literacy Measure Across Race/Ethnicity: Findings from The ECLIPPSE Project

“…15 A HL scoring rubric was used to assess holistically the HL of the patients based on the content of their SMs, adapting an established rubric used to score the writing abilities of high school students entering college. 15,26 An ordinal scale ranging from 1 to 6 assessed the extent to which patients' SMs demonstrated mastery of written English, organization, and focus, and a varied, accurate, and appropriate health vocabulary to enable clear access to the health-related content and ideas the patient wanted to express to their physician. 15 Because of limited relevance to the construct of HL, we removed parts of the rubric related to length, developing point of views, and discourse-related elements important in argumentative writing including the use of examples, reason, and evidence.…”

“…15 Prior research that has indicated that lexical features related to word choice, discourse features, and sentence structure are strong predictors of writing quality. [26][27][28] To capture these features, we used three NLP tools that derive linguistic features related to lexical sophistication, text cohesion, and syntactic complexity, which we briefly describe here. These included: (1) the Tool for the Automatic Analysis of Lexical Sophistication (TAALES), [29][30] a computational tool that incorporates over 100 classic and newly developed indices of lexical sophistication.…”