Personal Health Information Management Among Older Adults: Scoping Review

Abstract

Background Older adults face growing health care needs and could potentially benefit from personal health information management (PHIM) and PHIM technology. To ensure effective PHIM and to provide supportive tools, it is crucial to investigate the needs, challenges, processes, and tools used by this subpopulation. The literature on PHIM by older adults, however, remains scattered and has not provided a clear picture of what we know about the elements that play a role in older adults’ PHIM. Objective The goal of our review was to provide a comprehensive overview of extant knowledge on PHIM by older adults, establish the status quo of research on this topic, and identify research gaps. Methods We carried out a scoping review of the literature from 1998 to 2020, which followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) framework. First, we executed a broad and structured search. We then carried out a qualitative analysis of papers pertinent to the topic taking into consideration the five elements of the patient work system as follows: (1) personal-level factors, (2) PHIM tasks, (3) tools used, (4) physical settings of PHIM activities, and (5) socio-organizational aspects. Results The review included 22 studies. Consolidated empirical evidence was related to all elements of the patient work system. Multiple personal factors affected PHIM. Various types of personal health information were managed (clinical, patient-generated, and general) and tools were used (electronic, paper-based, and others). Older adults’ PHIM was intertwined with their surroundings, and various individuals participated. The largest body of evidence concerned personal factors, while findings regarding the physical environment of PHIM were scarce. Most research has thus far examined older adults as a single group, and scant attention has been paid to age subgroups. Conclusions Opportunities for further PHIM studies remain across all elements of the patient work system in terms of empirical, design science, or review work.

A Description of Personal Health Information Management Work With a Spotlight on the Practices of Older Adults: Qualitative e-Delphi Study With Professional Organizers

“…Consistent with the existing literature [ 3 ], our description of PHIM work relied heavily on the person, tasks, and tools components to portray a familiar array of person characteristics [ 9 , 23 , 24 , 39 , 48 - 50 ] and lists of analogous tasks [ 8 , 9 , 23 , 24 , 48 , 49 , 51 ] and tools [ 8 , 9 , 23 , 39 , 48 , 50 , 51 ] used by health care consumers. Our findings make unique contributions to PHIM descriptions, with the introduction of health finance management as a major PHIM goal for health care consumers.…”

“…Afterward, related codes within each component of the model were grouped into categories (eg, axial coding), and selective coding was used to identify the underlying themes and relationships among the model components (ie, derive key findings). Throughout the analysis, we referred to the PHIM literature [ 3 ] and literature that used and conceptualized the Patient Work System model [ 17 , 19 , 21 , 22 ]. This advanced the team’s understanding of the model constructs, the relationships among the model’s constructs, and our research data.…”

“…RenderX each round, cowrote the methods section, and reviewed and revised manuscript drafts. MK-K conducted a thorough literature review [3], wrote the introduction and conclusions, recommended revisions to the results and discussion, and formatted citations and references.…”

“…The vast amount of health information generated and the growing need to manage it can be overwhelming, particularly for older adults and those with chronic health issues. Furthermore, the tasks associated with handling PHI often involve multiple stakeholders, including close relatives assisting or caring for the person, such as a spouse or an adult child [ 3 ]. PHI stakeholders also include the person’s health care providers [ 3 ] defined herein as “persons who are trained and licensed to give health care” or “places that are licensed to give health care” [ 4 ].…”

“…The Patient Work System has been a widely adopted framework and has been applied in studies to understand patient self-care [ 19 , 21 , 22 ]. It has also been adopted in PHIM research, including in a literature review [ 3 ] and empirical studies that focused on PHIM as a work system [ 8 , 23 , 24 ].…”