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.

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

BACKGROUND: Personal health information (PHI) is created on behalf of and by health care consumers to support their care and wellness. Available tools designed to support PHI management (PHIM) remain insufficient. A comprehensive understanding of PHIM work is required, particularly for older adults, to offer more effective PHIM tools and support. OBJECTIVE: The primary objective of this study was to use the Patient Work System model to provide a holistic description of PHIM work from the perspective of professional organizers with experience assisting health care consumers, including older adults, in managing their PHI. A secondary objective was to examine how factors associated with 4 Patient Work System components (person, tasks, tools and technologies, and context) interact to support or compromise PHIM work performance. METHODS: A modified e-Delphi methodology was used to complete 3 web-based rounds of open-ended questions and obtain consensus among a panel of 16 experts in professional organizing. Data were collected between April and December 2017. The Patient Work System model was used as a coding schema and guided the interpretation of findings during the analysis. RESULTS: The PHIM work of adults who sought assistance focused on the tasks of acquiring, organizing, and storing 3 classifications of PHI (medical, financial, and reference) and then processing, reconciling, and storing the medical and financial classifications to tend to their health, health care, and health finances. We also found that the complexities of PHI and PHIM-related work often exceeded the abilities and willingness of those who sought assistance. A total of 6 factors contributed to the complexity of PHIM work. The misalignment of these factors was found to increase the PHIM workload, particularly for older adults. The life changes that often accompanied aging, coupled with obscure and fragmented health care provider- and insurer-generated PHI, created the need for much PHIM work. Acquiring and integrating obscure and fragmented PHI, detecting and reconciling PHI discrepancies, and protecting PHI held by health care consumers were among the most burdensome tasks, especially for older adults. Consequently, personal stakeholders (paid and unpaid) were called upon or voluntarily stepped in to assist with PHIM work. CONCLUSIONS: Streamlining and automating 2 of the most common and burdensome PHIM undertakings could drastically reduce health care consumers' PHIM workload: developing and maintaining accurate current and past health summaries and tracking medical bills and insurance claims to reconcile discrepancies. Other improvements that hold promise are the simplification and standardization of commonly used financial and medical PHI; standardization and automation of commonly used PHI acquisition interfaces; and provision of secure, Health Insurance Portability and Accountability Act (HIPAA)-certified PHI tools and technologies that control multiperson access for PHI stored by health care consumers in electronic and paper formats.

Risk factors of tear progression in symptomatic small to medium-sized full-thickness rotator cuff tear: relationship between occupation ratio of supraspinatus and work level.

BACKGROUND: Previous studies reported that full-thickness rotator cuff tear (FTRCT) is a risk factor for tear progression. However, there is no clear consensus on the risk factors of tear progression in FTRCT. PURPOSE: To identify the demographic and radiologic risk factors of tear progression in small to medium FTRCTs. METHODS: We retrospectively reviewed 81 shoulders of patients diagnosed with small or medium FTRCTs using magnetic resonance imaging (MRI) who underwent conservative treatment from January 2017 to November 2021. Various demographic factors, including patient work level and radiological factors such as atrophy of rotator cuff muscles were analyzed to evaluate their association with tear progression. Work level was divided into high (heavy manual labor), medium (manual labor with less activity), and low (sedentary work activity). The atrophy of rotator cuff muscles was calculated by occupation ratio. RESULTS: Tear progression was observed in 48% (39/81) of patients (criterion for tear progression was medial-lateral or anterior-posterior tear length > 5 mm). In patients with tear progression, the lengths of medial-lateral and anterior-posterior tears progressed by 6 mm and 3 mm, respectively. Among the rotator cuff muscles, fatty degeneration and occupation ratio of the supraspinatus were only worsened (P = .014, P = 0.013, respectively). The mean MRI follow-up duration was 14.8 ± 9.0 months. The significant risk factors of tear progression were high work level (odds ratio [OR], 7.728; 95% CI, 1.204-49.610; P = .031), and occupation ratio of the supraspinatus muscle (OR, 0.308; 95% CI, 0.158-0.604; P = .001). The optimal cutoff value for the occupation ratio of the supraspinatus was 0.55 (sensitivity 74%, specificity 62%). CONCLUSIONS: Tear progression was observed in approximately 50% of patients with symptomatic small to medium FTRCTs. High physical work level and atrophy of the supraspinatus muscle were independent risk factors of tear progression. The risk of tear progression increases with occupation ratio of the supraspinatus muscle < 0.55 and heavy manual labor.

Human factors/ergonomics work system analysis of patient work: state of the science and future directions.

PURPOSE: To demonstrate the use and value of the Human Factors/Ergonomics-based Systems Engineering Initiative for Patient Safety (SEIPS) family of work system models for studying and improving patient work. DATA SOURCES: We conducted a review of the published empirical literature applying the SEIPS family of work system models for patient work. STUDY SELECTION: Included studies had to apply one of the SEIPS family of work system models to study patient work; be published in a peer-reviewed journal in English and include analysis of data. We identified 16 articles that met our inclusion criteria. DATA EXTRACTION: For each study, we extracted settings and situations in which models were applied; research design; study methods; model(s) used; type and number of study participants; study objective(s); whether the study included an intervention; specific aspects of the model used; knowledge generated about patient work and benefits of using the models. RESULTS OF DATA SYNTHESIS: Our analysis revealed that a majority of studies were conducted in the United States, used qualitative or mixed methods and employed a variety of data collection techniques to study adult patient populations with chronic illness and their informal caregivers and healthcare providers performing patient work in the home and clinical setting. The studies resulted in a variety of useful products, demonstrating several benefits of using the models. CONCLUSION: Our review has demonstrated the value of using the SEIPS family of work systems models to study and improve patient and family contributions to health-related work.

How Patient Work Changes Over Time for People With Multimorbid Type 2 Diabetes: Qualitative Study.

BACKGROUND: The experiences of patients change throughout their illness trajectory and differ according to their medical history, but digital support tools are often designed for one specific moment in time and do not change with the patient as their health state changes. This presents a fragmented support pattern where patients have to move from one app to another as they move between health states, and some subpopulations of patients do not have their needs addressed at all. OBJECTIVE: This study aims to investigate how patient work evolves over time for those living with type 2 diabetes mellitus and chronic multimorbidity, and explore the implications for digital support system design. METHODS: In total, 26 patients with type 2 diabetes mellitus and chronic multimorbidity were recruited. Each interview was conducted twice, and interviews were transcribed and analyzed according to the Chronic Illness Trajectory Model. RESULTS: Four unique illness trajectories were identified with different patient work goals and needs: living with stable chronic conditions involves patients seeking to make patient work as routinized and invisible as possible; dealing with cycles of acute or crisis episodes included heavily multimorbid patients who sought support with therapy adherence; responding to unstable changes described patients currently experiencing rapid health changes and increasing patient work intensity; and coming back from crisis focused on patients coping with a loss of normalcy. CONCLUSIONS: Patient work changes over time based on the experiences of the individual, and its timing and trajectory need to be considered when designing digital support interventions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2018-022163.

The Sociological Perspective of Users' Invisible Work: A Qualitative Research Framework for Studying Digital Health Innovations Integration.

BACKGROUND: When new technology is integrated into a care pathway, it faces resistance due to the changes it introduces into the existing context. To understand the success or failure of digital health innovations, it is necessary to pay attention to the adjustments that users must perform to make them work, by reshaping the context and sometimes by altering the ways in which they perform activities. This adaptation work, most of which remains invisible, constitutes an important factor in the success of innovations and the ways in which they transform care practices. OBJECTIVE: This work aims to present a sociological framework for studying new health technology uses through a qualitative analysis of the different types of tasks and activities that users, both health professionals and patients, must perform to integrate these technologies and make them work in their daily routine. METHODS: This paper uses a three-part method to structure a theoretical model to study users' invisible work. The first part of the method includes a thematic literature review, previously published by one of the coauthors, of major sociological studies conducted on digital health innovations integration into existing care organizations and practices. The second part extends this review to introduce definitions and applications of the users' invisible work concept. The third part consists of producing a theoretical framework to study the concept according to the different contexts and practices of the users. RESULTS: The paper proposes four dimensions (organizational, interactional, practical, and experiential), each composed of a set of criteria that allow a comparative analysis of different users' work according to different health technologies. CONCLUSIONS: This framework can be applied both as an analytical tool in a research protocol and as an agenda to identify less visible adoption criteria for digital health technologies.

"It Is a Full-time Job to Be Ill": Patient Work Involved in Attending Formal Diabetes Care Among Socially Vulnerable Danish Type 2 Diabetes Patients.

Previous research has shown social inequality in type 2 diabetes prevalence and that socially vulnerable type 2 diabetes patients benefit less than average from health services. Based on ethnographic fieldwork carried out between February 2017 and March 2018 in a Danish specialized outpatient clinic, this article focuses on patient work among socially vulnerable type 2 diabetes patients. Through attending to the border zone between formal health care and self-care, we show that patients do a lot of work requiring skills, resources, and initiative, to access and benefit from formal care. This work is complex and implicit in the organization of care. Patients' social situations, especially their employment situation, complicate getting patient work done. Attending to patient work and implicit tasks in care organization may help us to see how social inequality in type 2 diabetes outcomes develops, and may be combated.

Strategies older adults use in their work to get back to normal following hospitalization.

Loss of function is a significant concern among hospitalized older adults, and prior research suggests they engage in dedicated work to regain "normal" function following hospitalization. This paper aims to describe the strategies older adults use to return to normal function and the conditions that influence their ability to do so. Recently discharged adults aged 65 and older (N = 14) completed in-depth one-on-one interviews. Data were analyzed using open, axial, and selective coding. Participants described strategies they used to regain their normal function following hospitalization: doing exercises, expanding physical space, resuming activities and daily cares, and tracking improvement with benchmarks. Several conditions, such as presence of informal and formal support, perceived threats, and poor physical or physiologic function, acted as barriers and facilitators to participants' ability to work back to normal function. Findings increase our understanding of patients' work to regain normal function and have important implications for practice.

A conceptual model of urgent care sense-making and help-seeking: a qualitative interview study of urgent care users in England.

BACKGROUND: Theoretical models have sought to comprehend and conceptualise how people seek help from health professionals but it is unclear if such models apply to urgent care. Much previous research does not explain the complex interactions that influence how people make sense of urgent care and how this shapes service use. This paper aims to conceptualise the complexity of sense-making and help-seeking behaviour in peoples' everyday evaluations of when and how to access modern urgent care provision. METHODS: This study comprised longitudinal semi-structured interviews undertaken in the South of England. We purposively sampled participants 75+, 18-26 years, and from East/Central Europe (sub-sample of 41 received a second interview at + 6-12 months). Framework analysis was thematic and comparative. RESULTS: The amount and nature of the effort (work) undertaken to make sense of urgent care was an overarching theme of the analysis. We distinguished three distinct types of work: illness work, moral work and navigation work. These take place at an individual level but are also shared or delegated across social networks and shaped by social context and time. We have developed a conceptual model that shows how people make sense of urgent care through work which then influences help-seeking decisions and action. CONCLUSIONS: There are important intersections between individual work and their social networks, further shaped by social context and time, to influence help-seeking. Recognising different, hidden or additional work for some groups may help design and configure services to support patient work in understanding and navigating urgent care.

Home is where the head is: a distributed cognition account of personal health information management in the home among those with chronic illness.

Managing chronic illness requires personal health information management (PHIM) to be performed by lay individuals. Paramount to understanding the PHIM process is understanding the sociotechnical system in which it frequently occurs: the home environment. We combined distributed cognition theory and the patient work system model to investigate how characteristics of the home interact with the cognitive work of PHIM. We used a 3D virtual reality CAVE that enabled participants who had been diagnosed with diabetes (N = 20) to describe how they would perform PHIM in the home context. We found that PHIM is distinctly cognitive work, and rarely performed 'in the head'. Rather, features of the physical environment, tasks, people, and tools and technologies present, continuously shape and are shaped by the PHIM process. We suggest that approaches in which the individual (sans context) is considered the relevant unit of analysis overlook the pivotal role of the environment in shaping PHIM. Practitioner Summary: We examined how Personal Health Information Management (PHIM) is performed in the homes of diabetic patients. We found that approaches to studying cognition that focus on the individual, to the exclusion of their context, overlook the pivotal role of environmental, social, and technological features in shaping PHIM.

What makes a home? Designing home personas to represent the homes of families caring for children with medical complexity.

Personas are widely recognized as valuable design tools for communicating dimensions of individuals, yet they often lack critical contextual factors. For those people managing chronic health conditions, the home is a critical context of their patient work system (PWS). We propose the development of 'home personas' to convey essential aspects of the home context to those tasked with designing technologies and interventions to fit it. We used an iterative, multi-stakeholder design process to design 'home personas' for a model population, families caring for children with medical complexity. Each of the four resultant home personas-Multi-level, Customized, Ranch, and Rental-has a unique home layout, pain points, and are described on three dimensions that emerged from the data. This study builds on a foundation of work in the emerging field of Patient Ergonomics, describing a mechanism for distilling rich descriptions of the PWS into brief yet informative design tools.

Patient decision making in recovering from surgery.

Patient work in surgery recovery is fraught with complex judgments and decisions. These decisions are not unlike ones that professionals make that we traditionally study with the Naturalistic Decision Making (NDM) theoretical lens and methods. Similarly, patients are making decisions in naturalistic settings and doing so with the objective of minimizing risk and maximizing safety. What is different is that patients are put in a position to perform complex, high level, high consequence work in the absence of any training, education, or decision support. Using a lived experience, I illustrate that the burden of judgement and decision making in surgery recovery work (e.g., caring for surgical sites, managing drains, managing medications, supporting activities of daily living) can be understood through a macrocognitive paradigm. Thus, the NDM theoretical lens and the associated methods is appropriate to study this problem space.

Exploring how caregivers for people living with dementia use strategies to overcome work system constraints.

Informal caregivers for persons living with dementia (PLWD) require interventions that incorporate caregiving context. We used the Patient Work System model to characterize caregiving context by identifying work system constraints experienced by caregivers during dementia care events (e.g., managing behavioral symptoms of dementia) and strategies used to overcome constraints. We conducted twenty semi-structured interviews with caregivers. We performed upward abstraction and strategy mapping and identified seven work system constraints and eight strategies used to overcome constraints across three care events. We found that strategies used by caregivers either directly modified a constraint or emphasized other positive work system components to overcome a constraint. For example a caregiver modified their bathroom to support the PLWD in bathing themselves properly and safely. These findings provide an understanding of how real-world context influences how caregivers deliver dementia care and the design and implementation of systems that support dementia caregivers.

Identifying daily activities of patient work for type 2 diabetes and co-morbidities: a deep learning and wearable camera approach.

OBJECTIVE: People are increasingly encouraged to self-manage their chronic conditions; however, many struggle to practise it effectively. Most studies that investigate patient work (ie, tasks involved in self-management and contexts influencing such tasks) rely on self-reports, which are subject to recall and other biases. Few studies use wearable cameras and deep learning to capture and classify patient work activities automatically. MATERIALS AND METHODS: We propose a deep learning approach to classify activities of patient work collected from wearable cameras, thereby studying self-management routines more effectively. Twenty-six people with type 2 diabetes and comorbidities wore a wearable camera for a day, generating more than 400 h of video across 12 daily activities. To classify these video images, a weighted ensemble network that combines Linear Discriminant Analysis, Deep Convolutional Neural Networks, and Object Detection algorithms is developed. Performance of our model is assessed using Top-1 and Top-5 metrics, compared against manual classification conducted by 2 independent researchers. RESULTS: Across 12 daily activities, our model achieved on average the best Top-1 and Top-5 scores of 81.9 and 86.8, respectively. Our model also outperformed other non-ensemble techniques in terms of Top-1 and Top-5 scores for most activity classes, demonstrating the superiority of leveraging weighted ensemble techniques. CONCLUSIONS: Deep learning can be used to automatically classify daily activities of patient work collected from wearable cameras with high levels of accuracy. Using wearable cameras and a deep learning approach can offer an alternative approach to investigate patient work, one not subjected to biases commonly associated with self-report methods.

Consumer workarounds during the COVID-19 pandemic: analysis and technology implications using the SAMR framework.

OBJECTIVE: To understand the nature of health consumer self-management workarounds during the COVID-19 pandemic; to classify these workarounds using the Substitution, Augmentation, Modification, and Redefinition (SAMR) framework; and to see how digital tools had assisted these workarounds. MATERIALS AND METHODS: We assessed 15 self-managing elderly patients with Type 2 diabetes, multiple chronic comorbidities, and low digital literacy. Interviews were conducted during COVID-19 lockdowns in May-June 2020 and participants were asked about how their self-management had differed from before. Each instance of change in self-management were identified as consumer workarounds and were classified using the SAMR framework to assess the extent of change. We also identified instances where digital technology assisted with workarounds. RESULTS: Consumer workarounds in all SAMR levels were observed. Substitution, describing change in work quality or how basic information was communicated, was easy to make and involved digital tools that replaced face-to-face communications, such as the telephone. Augmentation, describing changes in task mechanisms that enhanced functional value, did not include any digital tools. Modification, which significantly altered task content and context, involved more complicated changes such as making video calls. Redefinition workarounds created tasks not previously required, such as using Google Home to remotely babysit grandchildren, had transformed daily routines. DISCUSSION AND CONCLUSION: Health consumer workarounds need further investigation as health consumers also use workarounds to bypass barriers during self-management. The SAMR framework had classified the health consumer workarounds during COVID, but the framework needs further refinement to include more aspects of workarounds.

A human factors and ergonomics approach to conceptualizing care work among caregivers of people with dementia.

Society relies upon informal (family, friend) caregivers to provide much of the care to the estimated 43.8 million individuals living with Alzheimer's disease and related dementias globally. Caregivers rarely receive sufficient training, resources, or support to meet the demands associated with dementia care, which is often associated with increased risk of suboptimal outcomes. Human factors and ergonomics (HFE) can address the call for new approaches to better understand caregiving and support caregiver performance through systematic attention to and design of systems that support the work of caregivers- their care work. Thus, our objective was to perform a work system analysis of care work. We conducted a qualitative study using a Critical Incident Technique interviewing approach and Grounded Dimensional Analysis analytic procedures. Our findings introduce a new conceptual framework for understanding the care work system of dementia caregivers and suggest that care work is influenced by interactions among distinct caregiver goals, the task demands of the care needs of the person with dementia, daily life needs of the caregiver and family, and contextual factors that shape caregivers' perceptions surrounding care. The initial work system model produced by this study provides a foundation from which future work can further elucidate the care work system, determine how the care work system intersects and coordinates with other work systems such as the patient work system, and design systems that address caregivers' individual caregiving context.

Patient Work Personas of Type 2 Diabetes-A Data-Driven Approach to Persona Development and Validation.

Introduction: Many have argued that a "one-size-fits-all" approach to designing digital health is not optimal and that personalisation is essential to achieve targeted outcomes. Yet, most digital health practitioners struggle to identify which design aspect require personalisation. Personas are commonly used to communicate patient needs in consumer-oriented digital health design, however there is often a lack of reproducible clarity on development process and few attempts to assess their accuracy against the targeted population. In this study, we present a transparent approach to designing and validating personas, as well as identifying aspects of "patient work," defined as the combined total of work tasks required to manage one's health and the contextual factors influencing such tasks, that are sensitive to an individual's context and may require personalisation. Methods: A data-driven approach was used to develop and validate personas for people with Type 2 diabetes mellitus (T2DM), focusing on patient work. Eight different personas of T2DM patient work were constructed based physical activity, dietary control and contextual influences of 26 elderly Australian participants (median age = 72 years) via wearable camera footage, interviews, and self-reported diaries. These personas were validated for accuracy and perceived usefulness for design, both by the original participants and a younger (median age bracket = 45-54 years) independent online cohort f 131 T2DM patients from the United Kingdom and the United States. Results: Both the original participants and the independent online cohort reported the personas to be accurate representations of their patient work routines. For the independent online cohort, 74% (97/131) indicated personas stratified to their levels of exercise and diet control were similar to their patient work routines. Findings from both cohorts highlight aspects that may require personalisation include daily routine, use of time, and social context. Conclusion: Personas made for a specific purpose can be very accurate if developed from real-life data. Our personas retained their accuracy even when tested against an independent cohort, demonstrating their generalisability. Our data-driven approach clarified the often non-transparent process of persona development and validation, suggesting it is possible to systematically identify whether persona components are accurate or. and which aspects require more personalisation and tailoring.

Medication transitions: Vulnerable periods of change in need of human factors and ergonomics.

We present a novel view of transitions from the lens of patient ergonomics (the "science of patient work"), which posits that patients and other non-professionals perform effortful work towards health-related goals. In patient work transitions, patients experience changes in, for example, health, task demands, work capacity, roles and responsibilities, knowledge and skills, routines, needs and technologies. Medication transitions are a particularly vulnerable type of patient work transitions. We describe two cases of medication transitions-new medications and medication deprescribing-in which the patient work lens reveals many accompanying changes, vulnerabilities, and opportunities for human factors and ergonomics.

Designing Consumer Health Information Technology to Support Biform and Articulation Work: A Qualitative Study of Diet and Nutrition Management as Patient Work.

BACKGROUND: Diet and nutrition management is an integral component of Crohn disease (CD) management. This type of management is highly variable and individualized and, thus, requires personalized approaches. Consumer health information technology (CHIT) designed to support CD management has typically supported this task as everyday life work and, not necessarily, as illness work. Moreover, CHIT has rarely supported the ways in which diet and nutrition management requires coordination between multiple forms of patient work. OBJECTIVE: The purpose of this study was to investigate diet and nutrition management as biform work, identify components of articulation work, and provide guidance on how to design CHIT to support this work. METHODS: We performed a qualitative study in which we recruited participants from CD-related Facebook pages and groups. RESULTS: Semistructured interviews with 21 individuals showed that diet and nutrition management strategies were highly individualized and variable. Four themes emerged from the data, emphasizing the interactions of diet and nutrition with physical, emotional, information, and technology-enabled management. CONCLUSIONS: This study shows that the extent to which diet and nutrition management is biform work fluctuates over time and that articulation work can be continuous and unplanned. The design guidance specifies the need for patient-facing technologies to support interactions among diet and nutrition and other management activities such as medication intake, stress reduction, and information seeking, as well as to respond to the ways in which diet and nutrition management needs change over time.

Everyday objects and spaces: How they afford resilience in diabetes routines.

Thirty million Americans currently have diabetes, and a substantial portion do not reach the goals of clinical treatment. This is in part due to the complex barriers to effective self-care faced by people with diabetes. This study uses a patient work perspective, focusing on the everyday, lived experience of managing diabetes. Our primary research goal was to explore how the work of self-care is embedded in the other routines of everyday living. We found that everyday objects and spaces were instrumental in the incorporation of diabetes work into daily routines. Objects anchored diabetes tasks by linking illness-specific artifacts to space and time (e.g. a morning routine), and by enabling the performance on diabetes tasks while on the move in either planned or unplanned ways.