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

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

Journal

Journal of medical Internet research
ISSN: 1438-8871
Titre abrégé: J Med Internet Res
Pays: Canada
ID NLM: 100959882

Informations de publication

Date de publication:
12 04 2022
Historique:
received: 08 04 2021
accepted: 21 10 2021
revised: 21 06 2021
entrez: 12 4 2022
pubmed: 13 4 2022
medline: 15 4 2022
Statut: epublish

Résumé

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. 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. 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. 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 (t Participatory problem definition and community-based co-design, design-with methods, may produce more acceptable and effective solutions than traditional design-for approaches.

Sections du résumé

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 (t
CONCLUSIONS
Participatory problem definition and community-based co-design, design-with methods, may produce more acceptable and effective solutions than traditional design-for approaches.

Identifiants

pubmed: 35412457
pii: v24i4e29492
doi: 10.2196/29492
pmc: PMC9044168
doi:

Types de publication

Journal Article Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

e29492

Subventions

Organisme : NCI NIH HHS
ID : P30 CA177558
Pays : United States

Informations de 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. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 12.04.2022.

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Auteurs

Eliah Aronoff-Spencer (E)

Design Lab, University of California San Diego, La Jolla, CA, United States.
Division of Infectious Diseases and Global Public Health, Department of Medicine, UC San Diego School of Medicine, La Jolla, CA, United States.

Melanie McComsey (M)

Design Lab, University of California San Diego, La Jolla, CA, United States.

Ming-Yuan Chih (MY)

Department of Health & Clinical Sciences, College of Health Sciences, University of Kentuck, Lexington, CA, United States.

Alexandra Hubenko (A)

Qualcomm Institute, University of California San Diego, La Jolla, CA, United States.

Corey Baker (C)

Department of Computer Science, College of Engineering, University of Kentucky, Lexington, KY, United States.

John Kim (J)

Department of Health & Clinical Sciences, College of Health Sciences, University of Kentuck, Lexington, CA, United States.

David K Ahern (DK)

Department of Psychiatry, Brigham and Women's Hospital, Boston, MA, United States.

Michael Christopher Gibbons (MC)

Greystone Group, Inc, Washington, DC, United States.

Joseph A Cafazzo (JA)

University Health Network, Toronto, ON, Canada.

Pia Nyakairu (P)

University Health Network, Toronto, ON, Canada.

Robin C Vanderpool (RC)

National Cancer Institute, Bethesda, CA, United States.

Timothy W Mullett (TW)

Department of Health & Clinical Sciences, College of Health Sciences, University of Kentuck, Lexington, CA, United States.

Bradford W Hesse (BW)

National Cancer Institute (Retired), Kona, HI, United States.

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