Family Caregivers and Consumer Health Information Technology

Abstract

Health information technology has been embraced as a strategy to facilitate patients' access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients' desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.KEY WORDS: health information technology; electronic health records; family caregivers.

A National Profile Of End-Of-Life Caregiving In The United States

“…42 Although engaging family members through health information technology holds promise as a strategy to respect patients’ preferences for involving family and facilitating communication, awareness and uptake of such strategies remain low. 43 …”

Long‐Term Nursing Home Entry: A Prognostic Model for Older Adults with a Family or Unpaid Caregiver

“…Having a clearer understanding of what factors affect risk of NH entry is particularly important and timely at this juncture because of population aging, efforts to promote community living, and promulgation of alternative payment programs that create incentives to understand and mitigate nonmedical risk factors that contribute to service use . The diffusion of risk prediction tools in clinical software and electronic medical records along with consumer‐generated electronic data capture make it increasingly possible to incorporate a broader set of factors into risk prediction, such as information available from family caregivers . Although many people require short‐term postacute care in a nursing facility, long‐term NH entry is a less common event that is highly concentrated in persons with disability.…”

“…14 The diffusion of risk prediction tools in clinical software and electronic medical records along with consumer-generated electronic data capture make it increasingly possible to incorporate a broader set of factors into risk prediction, such as information available from family caregivers. 15,16 Although many people require short-term postacute care in a nursing facility, long-term NH entry is a less common event that is highly concentrated in persons with disability. The availability of a prognostic model could facilitate more effective targeting of supports to delay or avert this outcome.…”

“We're Taking Something So Human and Trying to Digitize”: Provider Recommendations for mHealth in Palliative Care

“…Health-related mobile applications typically target one, individual user rather than a network of users to maximize benefit. 35 Only a few elements of caregiver-family support functions exist via currently available mobile applications. 36 Research is needed to determine best practices for designing mHealth for simultaneous, age-diverse users of patients, caregivers, family, and social networks.…”