Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity

Abstract

Growing reliance on the patient portal as a mainstream modality in health system interactions necessitates prioritizing digital health equity through systems-level strategies that acknowledge and support all persons. Older adults with physical, cognitive, sensory, and socioeconomic vulnerabilities often rely on the involvement of family and friends in managing their health, but the role of these care partners in health information technology is largely undefined and poorly understood. This viewpoint article discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules to promote information transparency alongside broader shifts toward care delivery innovation and population aging. We describe implementation considerations and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery.

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

“…These technologies meet the expressed desire of patients and families for timely, accurate, comprehensive information, and contextualized medical advice. 43,44 The rapid evolution of such technologies and their ability to diffuse innovative strategies to engage, educate, and support patients and care partners at scale 21,45 make them highly relevant to LHS applications.…”

“…Privacy rules intended to safeguard personal health information are especially problematic in the context of ADRD, as they may inhibit care partner access to information that is vital when executing the patient's treatment plan. 45 Notable human factors considerations associated with emerging technologies have important benefits and drawbacks that must be addressed to achieve their full potential. 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.…”

“…At a most basic level, simplifying registration processes and workflows for shared portal access (also termed "family" or "proxy" access), such as at the time of diagnosis, explicitly documents who the person living with ADRD has chosen to involve in their care, while facilitating transparent information sharing as a step toward longitudinal partnership (bottom panel of Figure 1). 45 Engaging care partners through the patient portal opens TA B L E 3 Patient portal innovations to support persons with ADRD and their care partners…”

User Testing of the Veteran Delegation Tool: Qualitative Inquiry

“…Care partners' involvement facilitates patient-centered care, quality of the care received, and patient satisfaction [3]. Integrating care partners in health care delivery facilitates patient-centered care and improves patient engagement, the quality of care, patient outcomes, and patient satisfaction [4][5][6].…”

“…Care partners often play a critical role helping patients access and manage their health care needs. For example, patients often rely on their care partners to access patient electronic health portals to manage their health care [6,7]. Electronic health portals offer a convenient mechanism for individuals to manage and share health care information, facilitating patient involvement in the process of health care delivery.…”