Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Apr 8, 2021
Open Peer Review Period: Apr 8, 2021 - Jun 3, 2021
Date Accepted: Oct 21, 2021
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Designing for health system resilience in challenging times: A framework for remote cancer care through community codesign
ABSTRACT
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:
To design and implement a participatory framework to produce effective healthcare solutions through codesign with diverse stakeholders.
Methods:
We developed a design framework to co-create 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 codesign process would generate more innovative and resilient solutions. Discovery, design, and development were implemented through structured phases with “design studios” in 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 (SUS) as well as semi-structured user feedback.
Results:
We codesigned, developed, and tested a mobile application (myPath) and service model for distress surveillance and cancer care coordination following the Linking and Amplifying User-Centered Networks through Connected Health, or LAUNCH 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 co-developed digital myPath app showed the highest perceived combined usability (M=81.9, SD=15.2) compared to the current gold standard of cancer patient distress management, the Paper-based National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT) (M=74.2, SD=15.8). Testing of SUS subscales showed the myPath app had significantly better usability than the Paper DT (t(63)=2.611, p=0.01), while learnability did not differ between instruments (t(63)=-0.311, p=0.76). Notable differences by patient and provider scoring and feedback were found.
Conclusions:
Participatory problem definition and community-based codesign “design-with” methods may produce more acceptable and effective solutions than traditional “design for” approaches. Clinical Trial: N/A
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