Teens with complex chronic illnesses have difficulty understanding and articulating symptoms such as pain and emotional distress. Yet, symptom communication plays a central role in clinical care and illness management. To understand how design can help overcome these challenges, we created a visual library of 72 sketched illustrations, informed by the Observations of Daily Living framework along with insights from 11 clinician interviews. We utilized our library with storyboarding techniques, free-form sketching, and interviews, in co-design sessions with 13 pairs of chronically-ill teens and their parents. We found that teens depicted symptoms as being interwoven with narratives of personal and social identity. Teens and parents were enthusiastic about collaboratively-generated, interactive storyboards as a tracking and communication mechanism, and suggested three ways in which they could aid in communication and coordination with informal and formal caregivers. In this paper, we detail these findings, to guide the design of tools for symptom-tracking and incorporation of patient-generated data into pediatric care.
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Integrating Patient-Generated Observations of Daily Living into Pediatric Cancer Care: A Formative User Interface Design Study
Patient-generated data, such as recorded Observations of Daily Living (ODL) and Patient-Reported Outcomes (PRO) data, are valued sources of information in oncology care. However, prior work largely focuses on capturing clinician-defined, patient-generated data in adult oncology care. Emerging research at the intersection of human–computer interaction and medical informatics suggests that visual narratives of patients’
observations of daily living (Visual ODLs) could better support multi-party review of patients’ everyday symptoms and quality of life, potentially improving patient–clinician communication. In this paper, we build on a prior study of Visual ODLs by describing a formative, two-phase study with 15 pediatric oncology clinicians. In Phase I, we analyzed data from ethnographic interviews in a pediatric oncology setting to capture the needs of nurses, nurse practitioners, and oncologists. In Phase II, we constructed two low-fidelity dashboard display prototypes, populated with Visual ODLs contributed by actual adolescent oncology patients, and we subsequently interviewed pediatric oncology clinicians who reviewed each dashboard design. Findings from our study contribute four key design objectives for presenting interactive Visual ODL dashboards in pediatric oncology, along with three use cases for using these dashboards for symptom tracking and communication.
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- Award ID(s):
- 1652302
- NSF-PAR ID:
- 10084798
- Date Published:
- Journal Name:
- 2018 IEEE International Conference on Healthcare Informatics
- Page Range / eLocation ID:
- 265 to 275
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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Background Remote patient monitoring (RPM) technologies can support patients living with chronic conditions through self-monitoring of physiological measures and enhance clinicians’ diagnostic and treatment decisions. However, to date, large-scale pragmatic RPM implementation within health systems has been limited, and understanding of the impacts of RPM technologies on clinical workflows and care experience is lacking. Objective In this study, we evaluate the early implementation of operational RPM initiatives for chronic disease management within the ambulatory network of an academic medical center in New York City, focusing on the experiences of “early adopter” clinicians and patients. Methods Using a multimethod qualitative approach, we conducted (1) interviews with 13 clinicians across 9 specialties considered as early adopters and supporters of RPM and (2) speculative design sessions exploring the future of RPM in clinical care with 21 patients and patient representatives, to better understand experiences, preferences, and expectations of pragmatic RPM use for health care delivery. Results We identified themes relevant to RPM implementation within the following areas: (1) data collection and practices, including impacts of taking real-world measures and issues of data sharing, security, and privacy; (2) proactive and preventive care, including proactive and preventive monitoring, and proactive interventions and support; and (3) health disparities and equity, including tailored and flexible care and implicit bias. We also identified evidence for mitigation and support to address challenges in each of these areas. Conclusions This study highlights the unique contexts, perceptions, and challenges regarding the deployment of RPM in clinical practice, including its potential implications for clinical workflows and work experiences. Based on these findings, we offer implementation and design recommendations for health systems interested in deploying RPM-enabled health care.more » « less
- Free Publicly Accessible Full Text
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Accepted Manuscript1.0
- Conference Paper:
- https://doi.org/10.1109/ICHI.2018.00037
