"Tricky to get your head around"

Burgess, Eleanor R.; Reddy, Madhu; Davenport, Andrew; Laboi, Paul; Blandford, Ann

doi:10.1145/3290605.3300895

Cited by 22 publications

(2 citation statements)

References 77 publications

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“…Prior HCI research has examined the experiences of chronic disease treatments using patient journeys as a design framework [21,122], an approach that has been useful in guiding the design of technology interventions [38,136]. In particular, Hayes et al [49] describe the cancer journey in five phases: screening and diagnosis, initial information-seeking, acute care and treatment, no evidence of disease, and chronic disease and disease management.…”

Section: Design Frameworkmentioning

confidence: 99%

Parallel Journeys of Patients with Cancer and Depression: Challenges and Opportunities for Technology-Enabled Collaborative Care

Suh

Williams

Fann

et al. 2020

Proc. ACM Hum.-Comput. Interact.

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Depression is common but under-treated in patients with cancer, despite being a major modifiable contributor to morbidity and early mortality. Integrating psychosocial care into cancer services through the team-based Collaborative Care Management (CoCM) model has been proven to be effective in improving patient outcomes in cancer centers. However, there is currently a gap in understanding the challenges that patients and their care team encounter in managing co-morbid cancer and depression in integrated psycho-oncology care settings. Our formative study examines the challenges and needs of CoCM in cancer settings with perspectives from patients, care managers, oncologists, psychiatrists, and administrators, with a focus on technology opportunities to support CoCM. We find that: (1) patients with co-morbid cancer and depression struggle to navigate between their cancer and psychosocial care journeys, and (2) conceptualizing comorbidities as separate and independent care journeys is insufficient for characterizing this complex care context. We then propose the parallel journeys framework as a conceptual design

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Section: Design Frameworkmentioning

confidence: 99%

Parallel Journeys of Patients with Cancer and Depression: Challenges and Opportunities for Technology-Enabled Collaborative Care

Suh

Williams

Fann

et al. 2020

Proc. ACM Hum.-Comput. Interact.

View full text Add to dashboard Cite

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“…Patients conduct a variety of cognitive, visible, and collaborative work to accommodate health conditions and treatments, with such tasks changing throughout the illness journey as treatments are introduced or removed [9][10][11][12][13]. Using a work ergonomic system, Holden et al [2,14] posited that patient work is affected by a patient work system, which incorporates contextual factors affecting the performance of work [15][16][17][18][19][20]. A poor integration of patient work into the existing context and routine can generate excess stress, potentially contributing to noncompliance and suboptimal health outcomes [21,22].…”

Section: Introductionmentioning

confidence: 99%

Patient Work and Their Contexts: Scoping Review (Preprint)

Yin¹,

Jung²,

Coiera³

et al. 2019

Preprint

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BACKGROUND Having patients self-manage their health conditions is a widely promoted concept, but many patients struggle to practice it effectively. Moreover, few studies have analyzed the nature of work required from patients and how such work fits into the context of their daily life. OBJECTIVE This study aimed to review the characteristics of patient work in adult patients. Patient work refers to tasks that health conditions impose on patients (eg, taking medications) within a system of contextual factors. METHODS A systematic scoping review was conducted using narrative synthesis. Data were extracted from PubMed, Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO, including studies from August 2013 to August 2018. The included studies focused on adult patients and assessed one or more of the following: (1) physical health–related tasks, (2) cognitive health–related tasks, or (3) contextual factors affecting these tasks. Tasks were categorized according to the themes that emerged: (1) if the task is always visible to others or can be cognitive, (2) if the task must be conducted collaboratively or can be conducted alone, and (3) if the task was done with the purpose of creating resources. Contextual factors were grouped according to the level at which they exert influence (micro, meso, or macro) and where they fit in the patient work system (the macroergonomic layer of physical, social, and organizational factors; the mesoergonomic layer of household and community; and the microergonomic triad of person-task-tools). RESULTS In total, 67 publications were included, with 58 original research articles and 9 review articles. A variety of patient work tasks were observed, ranging from physical and tangible tasks (such as taking medications and visiting health care professionals) to psychological and social tasks (such as creating coping strategies). Patient work was affected by a range of contextual factors on the micro, meso, or macro levels. Our results indicate that most patient work was done alone, in private, and often imposing cognitive burden with low amounts of support. CONCLUSIONS This review sought to provide insight into the work burden of health management from a patient perspective and how patient context influences such work. For many patients, health-related work is ever present, invisible, and overwhelming. When researchers and clinicians design and implement patient-facing interventions, it is important to understand how the extra work impacts one’s internal state and coping strategy, how such work fits into daily routines, and if these changes could be maintained in the long term.

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Advanced Kidney Disease Patient Portal: Implementation and Evaluation with Haemodialysis Patients

Meiklem

Stevenson

Richarz

et al. 2021

Human-Computer Interaction – INTERACT 2021

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Patients on haemodialysis face complex care pathways, a high treatment burden and lower quality-of-life. Working with multidisciplinary domain experts, we have conducted several iterative development cycles to design, develop and evaluate a portal for patients on haemodialysis that can help them better understand and navigate their care pathways. A key functionality of the portal is to improve data and information sharing with clinicians, including on key aspects of quality-of-life through Patients Reported Outcome Measures. A case study was conducted with multidisciplinary experts and patients in the NHS Greater Glasgow and Clyde health board (Scotland), using interviews combined with the System Usability Scale (n=26). Patients' feedback and system use observations were used to further refine the system design requirements and functionalities. Key lessons include: a wide preference for tablet-based input vs paper, identification of case-specific accessibility issues and situational impairment, benefits of self-completed digital data collection in overcoming such issues and promoting patient independence and privacy, with considerations for maintaining perceived value and engagement with such systems and when to offer alternatives.

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"Tricky to get your head around"

Cited by 22 publications

References 77 publications

Parallel Journeys of Patients with Cancer and Depression: Challenges and Opportunities for Technology-Enabled Collaborative Care

Parallel Journeys of Patients with Cancer and Depression: Challenges and Opportunities for Technology-Enabled Collaborative Care

Patient Work and Their Contexts: Scoping Review (Preprint)

Advanced Kidney Disease Patient Portal: Implementation and Evaluation with Haemodialysis Patients

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