Supporting Communication About Values Between People with Multiple Chronic Conditions and their Providers

Berry, Andrew; Lim, Catherine; Hirsch, Tad; Hartzler, Andrea L.; Kiel, Linda; Bermet, Zoë A.; Ralston, James D.

doi:10.1145/3290605.3300700

Cited by 33 publications

(19 citation statements)

References 47 publications

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“…Work in HCI suggests strategies and tools to support self-reflection and communication, which may allow patients to correct misalignments with providers and articulate their values, self-care approaches, and how these intertwine [72]. Tools with prompts to steer reflection are promising to minimize burden and enable control over disclosure [12]. Beyond the expertise gained from reflecting on one's own lived experience, patients with chronic illness also build lay expertise by consulting online resources, researching established literature, and connecting with online health communities to discuss their unique case and brainstorm broader solutions to fill in gaps in knowledge.…”

Section: Work Across the Illness Trajectorymentioning

confidence: 99%

“…Given the necessary collaborative work of patients and providers in an enigmatic disease, explicit scaffolding and mechanisms for collaborative review of data, and of overall goals, values, and plans will promote trust and opportunities for aligning their vision for care. Inspired by research with patients managing multiple chronic conditions [12], structured approaches such as questionnaires to help prepare for encounters (i.e., pre-emptive grounding) and to guide the study visit (i.e., just-in-time grounding) could avoid and correct misalignments. Templated structuring of independent and collaborative reflection of health status (e.g., scaffolding to reconstruct illness experience [54]) can facilitate a collaborative clinical encounter.…”

Section: Designing Mechanisms To Correct Potential Patient-provider Mmentioning

confidence: 99%

“…Patient-generated data can facilitate a data-driven workflow of clinical encounters [23,65,121]. Some research has focused on understanding and designing for patient-provider collaboration in care [46,84,100,103], and recent work highlights the importance of reflection [12,49,72], context [18,92,121], and personal narrative [4,55] in managing chronic illness, with some focus on collaborative reflection between patients and providers [80,87,94].…”

Section: Introductionmentioning

confidence: 99%

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Divided We Stand

Pichon

Schiffer

Horan

et al. 2021

Proc. ACM Hum.-Comput. Interact.

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In chronic conditions, patients and providers need support in understanding and managing illness over time. Focusing on endometriosis, an enigmatic chronic condition, we conducted interviews with specialists and focus groups with patients to elicit their work in care specifically pertaining to dealing with an enigmatic disease, both independently and in partnership, and how technology could support these efforts. We found that the work to care for the illness, including reflecting on the illness experience and planning for care, is significantly compounded by the complex nature of the disease: enigmatic condition means uncertainty and frustration in care and management; the multi-factorial and systemic features of endometriosis without any guidance to interpret them overwhelm patients and providers; the different temporal resolutions of this chronic condition confuse both patients and providers; and patients and providers negotiate medical knowledge and expertise in an attempt to align their perspectives. We note how this added complexity demands that patients and providers work together to find common ground and align perspectives, and propose three design opportunities (considerations to construct a holistic picture of the patient, design features to reflect and make sense of the illness, and opportunities and mechanisms to correct misalignments and plan for care) and implications to support patients and providers in their care work. Specifically, the enigmatic nature of endometriosis necessitates complementary approaches from human-centered computing and artificial intelligence, and thus opens a number of future research avenues.

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Section: Work Across the Illness Trajectorymentioning

confidence: 99%

Section: Designing Mechanisms To Correct Potential Patient-provider Mmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Divided We Stand

Pichon

Schiffer

Horan

et al. 2021

Proc. ACM Hum.-Comput. Interact.

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“…This insider information encompassed both the patient’s health and the patient’s values. Like others have found in outpatient settings, 27 our participants felt the need to communicate both kinds of information to the care team, to build team SA, support patient autonomy, and achieve improved health outcomes that were also more consistent with the patient’s goals and values.…”

Section: Resultsmentioning

confidence: 53%

Different roles with different goals: Designing to support shared situational awareness between patients and clinicians in the hospital

Pollack

Mishra

Apodaca

et al. 2020

Journal of the American Medical Informatics Association

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Objective Team situational awareness helps to ensure high-quality care and prevent errors in the complex hospital environment. Although extensive work has examined factors that contribute to breakdowns in situational awareness among clinicians, patients’ and caregivers’ roles have been neglected. To address this gap, we studied team-based situational awareness from the perspective of patients and their caregivers. Materials and Methods We utilized a mixed-methods approach, including card sorting and semi-structured interviews with hospitalized patients and their caregivers at a pediatric hospital and an adult hospital. We analyzed the results utilizing the situational awareness (SA) theoretical framework, which identifies 3 distinct stages: (1) perception of a signal, (2) comprehension of what the signal means, and (3) projection of what will happen as a result of the signal. Results A total of 28 patients and 19 caregivers across the 2 sites participated in the study. Our analysis uncovered how team SA helps patients and caregivers ensure that their values are heard, their autonomy is supported, and their clinical outcomes are the best possible. In addition, our participants described both barriers—such as challenges with communication—and enablers to facilitating shared SA in the hospital. Discussion Patients and caregivers possess critical knowledge, expertise, and values required to ensure successful and accurate team SA. Therefore, hospitals need to incorporate tools that facilitate patients and caregivers as key team members for effective SA. Conclusions Elevating patients and caregivers from passive recipients to equal contributors and members of the healthcare team will improve SA and ensure the best possible outcomes.

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“…While perceived benefits are perceptions of positive outcomes caused by specific actions [44], personal values can involve different dimensions [45], from actions (e.g., engaging in self-care) and emotions (e.g., feelings of joy) to principles (e.g., gaining autonomy), abilities (e.g., physical and mental capacities), relationships (e.g., connecting with peers), and possessions (e.g., tangible things, such as technologies, and spaces). Berry et al [5]'s two-part co-design study with people with chronic conditions, carers, and providers offers guidance on supporting conversations about personal values between different parties by identifying design dimensions (e.g., guidance) and tensions (i.e., disclosure vs. effort). Our co-design project was not "values-led" [35,42].…”

Section: Prioritising Social Over Strategic Co-design Benefitsmentioning

confidence: 99%

Co-Designing Personal Health? Multidisciplinary Benefits and Challenges in Informing Diabetes Self-Care Technologies

Ayobi

Stawarz

Katz

et al. 2021

Proc. ACM Hum.-Comput. Interact.

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Co-design is a widely applied design process with well-documented values, including mutual learning and collective creativity. However, the real-world challenges of conducting multidisciplinary co-design research to inform the design of self-care technologies are not well established. We provide a qualitative account of a multidisciplinary project that aimed to co-design machine learning applications for Type 1 Diabetes (T1D) self-management. Through retrospective interviews, we identify not only perceived social, technological and strategic benefits of co-design but also organisational, translational and pragmatic design challenges: participants with T1D experienced difficulties in co-designing systems that met their individual self-care needs as part of group design activities; HCI and AI researchers described challenges collaborating to apply co-design outcomes to data-driven ML work; and industry collaborators highlighted academic data sharing regulations as cross-organisational challenges that can impede co-design efforts. Based on this understanding, we discuss opportunities for supporting multidisciplinary collaborations and aligning individual health needs with collaborative co-design activities.CCS Concepts: • Human-centered computing → Collaborative and social computing; Empirical studies in collaborative and social computing;

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Supporting Communication About Values Between People with Multiple Chronic Conditions and their Providers

Cited by 33 publications

References 47 publications

Divided We Stand

Divided We Stand

Different roles with different goals: Designing to support shared situational awareness between patients and clinicians in the hospital

Co-Designing Personal Health? Multidisciplinary Benefits and Challenges in Informing Diabetes Self-Care Technologies

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