JMIR Publications

ABSTRACT

The U.S. health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the increased uptake and familiarity of portals to personal health information are increasingly popular among patients. Technology innovations like shared access to the portal—which uses separate identity credentials to differentiate between the patient and care partner—is an existing, although not well-known or commonly used strategy that allows patients to identify who they do and do not want to involve in their care. However, the processes for patients to grant shared access to portals are often limited and/or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patients’ identity credentials—a “do-it-yourself” solution at conflict with a health systems’ legal responsibility to protect patient privacy and autonomy. The personal narratives in this article (shared by permission) elaborate on quantitative studies, and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved—patients, clinicians, and care partners. Electronic Health Record (EHR) vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients.