Macroergonomic components of the patient work system shaping dyadic care management during adolescence: a case study of type 1 diabetes.

The role of the social, physical, and organisational environments in shaping how patients and their caregivers perform work remains largely unexplored in human factors/ergonomics literature. This study recruited 19 dyads consisting of a parent and their child with type 1 diabetes to be interviewed individually and analysed using a macroergonomic framework. Our findings aligned with the macroergonomic factors as presented in previous models, while highlighting the need to expand upon certain components to gain a more comprehensive representation of the patient work system as relevant to dyadic management. Examples of design efforts that should follow from these findings include expanding existing data sharing options to include information from the external environment and capitalising on the capabilities of artificial intelligence as a decision support system. Future research should focus on longitudinally assessing patient work systems throughout transition periods in addition to more explicitly exploring the roles of social network members.

Work performed by patients and their caregivers is shaped by the social, physical, and organisational contexts they are embedded within. This paper explored how adolescents with type 1 diabetes managed their health alongside their parents in the context of these macroergonomic factors. These findings have implications for research and design.

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.

Engaging the disability community in informatics research: rationales and practical steps.

As the informatics community grows in its ability to address health disparities, there is an opportunity to expand our impact by focusing on the disability community as a health disparity population. Although informaticians have primarily catered design efforts to one disability at a time, digital health technologies can be enhanced by approaching disability from a more holistic framework, simultaneously accounting for multiple forms of disability and the ways disability intersects with other forms of identity. The urgency of moving toward this more holistic approach is grounded in ethical, legal, and design-related rationales. Shaped by our research and advocacy with the disability community, we offer a set of guidelines for effective engagement. We argue that such engagement is critical to creating digital health technologies which more fully meet the needs of all disabled individuals.

Ensuring full participation of people with disabilities in an era of telehealth.

The widespread use of telehealth resulting from the COVID-19 pandemic has the potential to further exacerbate inequities faced by people with disabilities. Although, for some members of the disability community, the option to engage with telehealth may result in reduced barriers to care, for others, inadequate attention to the design, implementation, and policy dimensions may be detrimental. Addressing such considerations is imperative to mitigate health inequities faced by the disability community.

Recent trends in diabetes-related consumer health information technology research.

Diabetes-related consumer health information technology (CHIT) has been designed to facilitate self-management practices, and its use has improved health outcomes for many consumers. This analysis sought to identify tendencies in diabetes-related CHIT research from 2010-2015 to help researchers find novel research topics, periodicals, collaborators, and funding agencies and experts and lay consumers to find scholarly information. Six search engines encompassing computer science, engineering, and medicine yielded potential diabetes-related CHIT publications. Abstracts and full texts were screened based on inclusion and exclusion criteria. Information on year, periodical, periodical domain, keywords, author location, author institutions, authors, and funding agencies were collected from included publications. The screening process yielded 1551 publications. Studies were published in a core of twenty periodicals, commonly comprising medicine or technology domains. "Telemedicine" was the most frequently used keyword. Harvard University, Dr. Eirik Årsand, and the National Institute of Diabetes and Digestive Kidney Diseases were the most frequent author institution, author, and funding agency, respectively, associated with publications. This analysis revealed potential for novel research on the sociology and economics of diabetes-related CHIT, among other topics. A lack of collaboration between top authors in the field indicates potential for new, impactful collaborations. Ongoing bibliometric research will be necessary to assess changes in this field. The opportunity exists to inform lay consumers and researchers through bibliometric analyses of other consumer health informatics topics.

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.