Patient portal access for caregivers of adult and geriatric patients: reframing the ethics of digital patient communication

Abstract

Patient portals are poised to transform health communication by empowering patients with rapid access to their own health data. The 21st Century Cures Act is a US federal law that, among other provisions, prevents health entities from engaging in practices that disrupt the exchange of electronic health information—a measure that may increase the usage of patient health portals. Caregiver access to patient portals, however, may lead to breaches in patient privacy and confidentiality if not managed properly through proxy accounts. We present an ethical framework that guides policy and clinical workflow development for healthcare institutions to support the best use of patient portals. Caregivers are vital members of the care team and should be supported through novel forms of health information technology (IT). Patients, however, may not want all information to be shared with their proxies so healthcare institutions must support the development and use of separate proxy accounts as opposed to using the patient’s own account as well provide controls for limiting the scope of information displayed in the proxy accounts. Lastly, as socioeconomic barriers to adoption of health IT persist, healthcare providers must work to ensure multiple streams of patient communication, to prevent further propagating health inequities.

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

“…5 Beyond making the process of granting or receiving shared access easier, health systems, electronic health record vendors, patients and care partners should all engage together in conversations about how patient privacy is affected by shared access, as each have a significant role to play in protecting privacy while also improving access. [20][21][22] Protecting patient data from unauthorized disclosure is a central goal of the Health Insurance Portability and Accountability Act (HIPAA). Administrative processes that were noted as difficult (e.g., paper forms, requiring in person registration) were likely put in place by organizations to comply with HIPAA and ensure that only people specifically authorized by the patient were granted access to their health information.…”

Changes in Documentation Due to Patient Access to Electronic Health Records: Protocol for a Scoping Review

“…Electronic health records (EHRs) are common in almost all areas of health care and are an indispensable tool for saving and sharing information between health care professionals (HCPs) [1]. A more recent development focuses on opening clinical notes or entire EHRs for patients [2] and their proxies [3][4][5][6][7]. These so-called patient-accessible electronic health records (PAEHRs) are well established internationally, especially in Scandinavian countries and the United States, but are not yet fully embedded even among high-income countries [8][9][10][11].…”