Monitoring for change: the role of family and friends in helping older adults manage personal health information

Objective: Although family and friends (FF) often play a significant support role in the health of older adults (OA), we know little about their role in personal health information management (PHIM). To address this gap and inform the design of PHIM tools, we describe the work, needs, and barriers of FF in the context of PHIM for OAs. Methods: We conducted semi-structured telephone interviews with 52 FF identified by OA as being important in their health and PHIM. We analyzed interview transcripts for themes about FF information work, barriers, and support needs. Results: FF play a supportive role in OA health maintenance, medical encounters, decision making, and daily activities. Monitoring, the ongoing process of seeking information related to the OA status, emerged as a key activity comprised of 3 phases: detection, interpretation, and action. Barriers to monitoring included OA choices and constraints, FF constraints, and difficulty with technological tools, resources, health information exchange between providers, social network dynamics, and physical distance. Conclusions: FF frequently monitor for change in OA well-being, seeking up-to-date information to facilitate support of OA PHIM. Health information technology tools designed for FF can support all phases of monitoring by providing: (1) timely and granular levels of access to OA health information as the OA ages; (2) tailored health education for FF that is based on OA clinical data; and (3) networking platforms that integrate delegation, volunteering, and relevant resources, along with tools to facilitate support of OA appointment calendars and medication management. Such tools could reduce the burden of PHIM for OA and their loved ones.