Uncovering the invisible patient work system through a case study of breast cancer self-management

Abstract

As patients transition from passive recipients to actors in their health management, there is an opportunity to enhance theoretical frameworks describing the patient work system. Previous macroergonomic frameworks depict how patients manage health outside the institutional healthcare system, though none formally integrate the concept of invisible work – self-management practices undervalued or unseen by healthcare providers. This article overlays invisible work onto the patient work system through a case study of breast cancer self-management. Thirty breast cancer survivors were interviewed about positive and negative experiences post-diagnosis. Invisible and visible components of participants’ work systems were explicated through qualitative content analysis. The results demonstrate that all participants had invisible work system components, and based on these findings, this article theorises the existence of an 'invisible patient work system.' Future research and design to support self-management practices should explicitly address the invisible characteristics of the work systems in which patients are embedded.Practitioner Summary: This article seeks to enhance the healthcare human factors literature by integrating the concept of invisible work into preexisting patient work system models. Through a secondary analysis of an interview study with 30 breast cancer survivors, we found that all participants recalled invisible components of their respective work systems.AbbreviationsCHITConsumer Health Information TechnologySEIPSSystems Engineering Initiative for Patient SafetyIRBInstitutional Review BoardSESSocioeconomic StatusmHealthMobile HealthPHRPatient Health RecordICANInstrument for Patient Capacity AssessmentHIPAAHealth Insurance Portability and Accoutability Act