“Managing the Binder”: A Systematic Review of the Burdens Experienced by Patients and Carers in Managing Personal Health Information Across Fragmented Healthcare Systems

Abstract

Background: Fragmented healthcare systems require patients and informal carers to collect, organise, transfer, and interpret personal health information across providers. This review examined the burdens of this work, its management methods, and the evidence for digital tools intended to reduce it. Methods: MEDLINE, Embase, CINAHL, and the Cochrane Library were searched for English-language primary studies published from January 2000 to 25 June 2026. Eligible studies examined patient- or carer-led management of personal health information in community, outpatient, or longitudinal care. Two reviewers independently screened records. The findings were synthesised narratively because of study heterogeneity. Results: Eleven studies published between 2005 and 2021 were included: seven from the United States, two from Italy, and one from Canada and Israel each. Ten used qualitative methods and one used mixed methods. Patients and carers managed medications, appointments, test results, correspondence, medical histories, and insurance information using folders, binders, handwritten notes, calendars, spreadsheets, memory, and, less commonly, digital portals. Reported burdens included time, administrative effort, cognitive demand, emotional distress, and responsibility for maintaining continuity between services. Burdens were greatest when information demands increased while illness reduced a patient’s capacity to manage them. Paper-based systems remained common because they were visible, portable, and easy to annotate. No study directly tested whether a digital intervention reduced information management burden, and none were conducted in Australia. Conclusions: Personal health information management (PHIM) is substantial but largely unrecognised patient and carer work arising partly from fragmented information exchange. The available evidence identifies design considerations for information management, but it does not establish that digital interventions can reduce burden.

The authors' abstract, as published at the source. Healthcare, 2026 · DOI ↗