Co-created Mobile Apps for Palliative Care Using Community-Partnered Participatory Research: Development and Usability Study

Jafar Al-Mondhiry, Sarah D'Ambruoso, Christopher Pietras, Thomas Strouse, Dikla Benzeevi, Armen C Arevian, Kenneth B Wells, Jafar Al-Mondhiry, Sarah D'Ambruoso, Christopher Pietras, Thomas Strouse, Dikla Benzeevi, Armen C Arevian, Kenneth B Wells

Abstract

Background: Open design formats for mobile apps help clinicians and stakeholders bring their needs to direct, co-creative solutions. Palliative care for patients with advanced cancers requires intensive monitoring and support and remains an area in high need for innovation.

Objective: This study aims to use community-partnered participatory research to co-design and pretest a mobile app that focuses on palliative care priorities of clinicians and patients with advanced cancer.

Methods: In-person and teleconference workshops were held with patient and family stakeholders, researchers, and clinicians in palliative care and oncology. Question prompts, written feedback, semistructured interviews, and facilitated group discussions identified the core palliative care needs. Using Chorus, a no-code app-building platform, a mobile app was co-designed with the stakeholders. A pretest with 11 patients was conducted, with semistructured interviews of clinician and patient users for feedback.

Results: Key themes identified from the focus groups included needs for patient advocacy and encouragement, access to vetted information, patient-clinician communication support, and symptom management. The initial prototype, My Wellness App, contained a weekly wellness journal to track patient-reported symptoms, goals, and medication use; information on self-management of symptoms; community resources; and patient and caregiver testimonial videos. Initial pretesting identified value in app-based communication for clinicians, patients, and caregivers, with suggestions for improving user interface, feedback and presentation of symptom reports, and gamification and staff coordinators to support patient app engagement.

Conclusions: The development of a mobile app using community-partnered participatory research is a low-technology and feasible intervention for palliative care. Iterative redesign and user interface expertise may improve implementation.

Keywords: CPPR; PRO; community-partnered participatory research; digital health; eHealth; mHealth; mobile apps; mobile health; mobile phone; oncology; palliative care; patient advocacy; patient-reported outcomes; quality of life; survivorship.

Conflict of interest statement

Conflicts of Interest: AA reports owning stock, patents, and leadership within Chorus Innovations, Inc, where he serves as the chief executive officer.

©Jafar Al-Mondhiry, Sarah D'Ambruoso, Christopher Pietras, Thomas Strouse, Dikla Benzeevi, Armen C Arevian, Kenneth B Wells. Originally published in JMIR Formative Research (https://formative.jmir.org), 23.06.2022.

Figures

Figure 1
Figure 1
Timeline for app development.
Figure 2
Figure 2
Work group structure and feedback cycles. QI: quality improvement.
Figure 3
Figure 3
Example of My Wellness Journal details.
Figure 4
Figure 4
Example of modified Edmonton Symptom Assessment Scale representations.

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