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

Eliah Aronoff-Spencer, Melanie McComsey, Ming Yuan Chih, Alexandra Hubenko, Corey Baker, John Kim, David K. Ahern, Michael Christopher Gibbons, Joseph A. Cafazzo, Pia Nyakairu, Robin C. Vanderpool, Timothy W. Mullett, Bradford W. Hesse

Research output: Contribution to journalArticlepeer-review

2 Scopus citations

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: 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.

Original languageEnglish
Article numbere29492
JournalJournal of Medical Internet Research
Volume24
Issue number4
DOIs
StatePublished - Apr 2022

Bibliographical note

Funding Information:
The authors would like to acknowledge their public health, clinical, and community partners across the state of Kentucky, patients and their families in Kentucky who are affected by cancer, and the health care professionals and informal caregivers who care for those with cancer, and especially the People’s Rural Telephone Cooperative for helping the authors to understand how to provide a path forward on connecting patients in rural locations to their care teams. Special thanks to Meghan Johnson and Anna McCowan from the University of Kentucky for invaluable support and to Dr Kevin Patrick for his early vision and contributions to this work. This work was supported by the Behavioral and Community‐Based Research Shared Resource Facility at the University of Kentucky Markey Cancer Center (P30CA177558). The University of Kentucky received funding from ICF Macro, Inc, to conduct LAUNCH (Linking and Amplifying User-Centered Networks through Connected Health)–related activities (2018-2019). Amgen provided funding for the University of California San Diego contributions, whereas the Federal Communications Commission provided funding for the Connect2HealthFCC Task Force activities. Further material can be viewed in the Multimedia Appendix 1.

Publisher Copyright:
© Eliah Aronoff-Spencer, Melanie McComsey, Ming-Yuan Chih, Alexandra Hubenko, Corey Baker, John Kim, David K Ahern, Michael Christopher Gibbons, Joseph A Cafazzo, Pia Nyakairu, Robin C Vanderpool, Timothy W Mullett, Bradford W Hesse.

Keywords

  • Appalachia
  • cancer care
  • distress screening
  • human-centered design
  • mobile phone
  • participatory design

ASJC Scopus subject areas

  • Health Informatics

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