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

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. Abbreviations CHIT Consumer Health Information Technology SEIPS Systems Engineering Initiative for Patient Safety IRB Institutional Review Board SES Socioeconomic Status mHealth Mobile Health PHR Patient Health Record ICAN Instrument for Patient Capacity Assessment HIPAA Health Insurance Portability and Accoutability Act.

From loquacious to reticent: understanding patient health information communication to guide consumer health IT design.

BACKGROUND AND SIGNIFICANCE: It is increasingly recognized that some patients self-manage in the context of social networks rather than alone. Consumer health information technology (IT) designed to support socially embedded self-management must be responsive to patients' everyday communication practices. There is an opportunity to improve consumer health IT design by explicating how patients currently leverage social media to support health information communication. OBJECTIVE: The objective of this study was to determine types of health information communication patterns that typify Facebook users with chronic health conditions to guide consumer health IT design. MATERIALS AND METHODS: Seven hundred participants with type 2 diabetes were recruited through a commercial survey access panel. Cluster analysis was used to identify distinct approaches to health information communication both on and off Facebook. Analysis of variance (ANOVA) methods were used to identify demographic and behavioral differences among profiles. Secondary analysis of qualitative interviews ( n = 25) and analysis of open-ended survey questions were conducted to understand participant rationales for each profile. RESULTS: Our analysis yielded 7 distinct health information communication profiles. Five of 7 profiles had consistent patterns both on and off Facebook, while the remaining 2 demonstrated distinct practices, with no health information communication on Facebook but some off Facebook. One profile was distinct from all others in both health information communication practices and demographic composition. Rationales for following specific health information communication practices were categorized under 6 themes: altruism, instrumental support, social support, privacy and stigma, convenience, and Facebook knowledge. CONCLUSION: Facebook has been widely adopted for health information communication; This study demonstrates that Facebook has been widely adopted for health information communication. It also shows that the ways in which patients communicate health information on and off Facebook are diverse.