Designing a Framework for Remote Cancer Care Through Community Co-design: Participatory Development Study.

BACKGROUND: Recent shifts to telemedicine and remote patient monitoring demonstrate the potential for new technology to transform health systems; yet, methods to design for inclusion and resilience are lacking. OBJECTIVE: The aim of this study is to design and implement a participatory framework to produce effective health care solutions through co-design with diverse stakeholders. METHODS: We developed a design framework to cocreate solutions to locally prioritized health and communication problems focused on cancer care. The framework is premised on the framing and discovery of problems through community engagement and lead-user innovation with the hypothesis that diversity and inclusion in the co-design process generate more innovative and resilient solutions. Discovery, design, and development were implemented through structured phases with design studios at various locations in urban and rural Kentucky, including Appalachia, each building from prior work. In the final design studio, working prototypes were developed and tested. Outputs were assessed using the System Usability Scale as well as semistructured user feedback. RESULTS: We co-designed, developed, and tested a mobile app (myPath) and service model for distress surveillance and cancer care coordination following the LAUNCH (Linking and Amplifying User-Centered Networks through Connected Health) framework. The problem of awareness, navigation, and communication through cancer care was selected by the community after framing areas for opportunity based on significant geographic disparities in cancer and health burden resource and broadband access. The codeveloped digital myPath app showed the highest perceived combined usability (mean 81.9, SD 15.2) compared with the current gold standard of distress management for patients with cancer, the paper-based National Comprehensive Cancer Network Distress Thermometer (mean 74.2, SD 15.8). Testing of the System Usability Scale subscales showed that the myPath app had significantly better usability than the paper Distress Thermometer (t63=2.611; P=.01), whereas learnability did not differ between the instruments (t63=-0.311; P=.76). Notable differences by patient and provider scoring and feedback were found. CONCLUSIONS: Participatory problem definition and community-based co-design, design-with methods, may produce more acceptable and effective solutions than traditional design-for approaches.

Space in Hand and Mind: Gesture and Spatial Frames of Reference in Bilingual Mexico.

Speakers of many languages prefer allocentric frames of reference (FoRs) when talking about small-scale space, using words like "east" or "downhill." Ethnographic work has suggested that this preference is also reflected in how such speakers gesture. Here, we investigate this possibility with a field experiment in Juchitán, Mexico. In Juchitán, a preferentially allocentric language (Isthmus Zapotec) coexists with a preferentially egocentric one (Spanish). Using a novel task, we elicited spontaneous co-speech gestures about small-scale motion events (e.g., toppling blocks) in Zapotec-dominant speakers and in balanced Zapotec-Spanish bilinguals. Consistent with prior claims, speakers' spontaneous gestures reliably reflected either an egocentric or allocentric FoR. The use of the egocentric FoR was predicted-not by speakers' dominant language or the language they used in the task-but by mastery of words for "right" and "left," as well as by properties of the event they were describing. Additionally, use of the egocentric FoR in gesture predicted its use in a separate nonlinguistic memory task, suggesting a cohesive cognitive style. Our results show that the use of spatial FoRs in gesture is pervasive, systematic, and shaped by several factors. Spatial gestures, like other forms of spatial conceptualization, are thus best understood within broader ecologies of communication and cognition.

Barn-Raising on the Digital Frontier: The L.A.U.N.C.H. Collaborative.

A meta-analysis of oncology papers from around the world revealed that cancer patients who lived more than 50 miles away from hospital centers routinely presented with more advanced stages of disease at diagnosis, exhibited lower adherence to prescribed treatments, presented with poorer diagnoses, and reported a lower quality of life than patients who lived nearer to care facilities. Connected health approaches-or the use of broadband and telecommunications technologies to evaluate, diagnose, and monitor patients beyond the clinic-are becoming an indispensable tool in medicine to overcome the obstacle of distance.

Experiencing Cancer in Appalachian Kentucky.

Quilted Appalachian Sunset©2011 Jim Harrisjim-harris.pixels.com Nothing tells the story of people working together better than a community quilt. A diversity of talents, colors, and materials brought together through skill and shared purpose. Perhaps never before have we as Americans needed a stronger reminder that many hands make short work of big problems. The work presented here by the L.A.U.N.C.H. Collaborative offers a new framework for health care that could be compared to a digital quilt, powered by community-based participatory design, with lived expertise and the newest advances in broadband-enabled connected health solutions. This work demonstrates the value and need to engage local communities and what can be learned when beneficiaries and traditional caregivers work together to develop healthcare solutions.