JMIR Publications

ABSTRACT

Background:

Open design formats for mobile applications 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:

To use community partnered participatory research (CPPR) to co-design a mobile application to meet the palliative care priorities of clinicians and patients with advanced cancer.

Methods:

In-person and virtual workshops were held with patient and community stakeholders, researchers, and clinicians from palliative care and oncology. Question prompts, written feedback, semi-structured interviews and facilitated group discussion identified core palliative care needs. Using Chorus, a no-code app building platform, a mobile app was co-designed with stakeholders. A pilot test with a cohort of 11 patients was conducted, with semi-structured interviews of clinician and patient users for feedback.

Results:

Key themes identified from focus groups included patient advocacy and encouragement, access to vetted information, patient/clinician communication, and symptom management. The final prototype, “My Wellness App,” contained: 1) a weekly wellness journal to track patient-reported symptoms, goals, and medication use; 2) information on self-management of symptoms; 3) lists of community resources; and 4) patient and caregiver testimonial videos. Initial pilot testing identified value in app-based communication for clinicians, patients, and caregivers, with needs for improving user interface, feedback and presentation of symptom reports, gamification, and integration of a coordinator to support patient app engagement.

Conclusions:

Development of a mobile app using CPPR is a low-cost, low-tech, and feasible intervention for palliative care delivery. Iterative re-design and user interface expertise may improve implementation.