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

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.

Mapping Factors That Affect the Uptake of Digital Therapeutics Within Health Systems: Scoping Review

“…On the basis of the mapped literature, the nature, content, and structure of digital therapeutics are major determinants of their uptake and effectiveness across countries [ 1 , 4 , 13 , 19 , 40 , 63 , 100 , 102 , 189 , 191 - 194 , 200 , 205 , 230 , 246 , 265 , 266 ]. The design of digital therapeutics needs to be driven by the needs and expectations of patients [ 56 , 61 , 66 , 68 , 84 , 100 , 102 , 117 , 118 , 122 , 132 , 136 , 140 , 141 , 168 , 177 , 189 , 191 - 194 , 200 , 202 , 208 , 214 - 216 , 221 , 230 , 233 , 250 , 266 , 273 , 274 ] while acknowledging that patient needs may shift with time and disease progression [ 140 ]. They need to have clear aims and a position in the health care pathway that is understood by patients and professionals, with comprehensive and trusted information provided about the qualities and services of the devices and targeted health condition [ 56 , 57 , 93 , 118 , 142 , 174 , 177 , 178 , …”

“…The design of digital therapeutics needs to be driven by the needs and expectations of patients [ 56 , 61 , 66 , 68 , 84 , 100 , 102 , 117 , 118 , 122 , 132 , 136 , 140 , 141 , 168 , 177 , 189 , 191 - 194 , 200 , 202 , 208 , 214 - 216 , 221 , 230 , 233 , 250 , 266 , 273 , 274 ] while acknowledging that patient needs may shift with time and disease progression [ 140 ]. They need to have clear aims and a position in the health care pathway that is understood by patients and professionals, with comprehensive and trusted information provided about the qualities and services of the devices and targeted health condition [ 56 , 57 , 93 , 118 , 142 , 174 , 177 , 178 , 186 , 190 , 214 , 221 , 228 , 250 , 252 , 259 , 265 , 266 , 273 ]. They should also be easy and straightforward to understand and use [ 1 , 4 , 13 , 19 , 40 , 42 , 117 , 135 ,…”

“…They should also be easy and straightforward to understand and use [ 1 , 4 , 13 , 19 , 40 , 42 , 117 , 135 , 141 , 150 , 193 , 194 , 203 , 208 , 217 , 250 , 252 , 265 , 266 , 273 ], as well as have the ability to be personalized according to patient needs and preferences [ 4 , 13 , 62 , 117 , 208 , 216 , 217 , 220 , 246 ]. Finally, a key property and enabler of the reimbursement of digital therapeutics is their interaction with the target population: they should be co-designed and coimplemented with patients and health professionals to maximize the likelihood of their uptake by the relevant stakeholders, with the recognition of the fact that engagement might differ across population groups in different countries [ 4 , 13 , 19 , 40 , 47 , 56 , 57 , 89 , 129 , 166 , 174 , 189 , 190 , 200 , 214 , 215 , 220 , 230 , 250 ].…”

“…On the basis of the mapped literature, the nature, content, and structure of digital therapeutics are major determinants of their uptake and effectiveness across countries [1,4,13,19,40,63,100,102,189,[191][192][193][194]200,205,230,246,265,266]. The design of digital therapeutics needs to be driven by the needs and expectations of patients [56,61,66,68,84,100,102,117,118,122,132,136,140,141,168,177,189,[191][192][193][194]200,202,208,[214][215][216]221,230,233,…”

Compassion in turbulent times : The co-design and mixed methods evaluation of a mobile self-compassion intervention for people with cancer.

“…Co-design typically involves offering participants creative tools that allow them to express themselves as experts of their experience, such as prototyping, card-sorting General Introduction and design thinking exercises (Bjögvinsson, Ehn, & Hillgren, 2012;Bødker, Dindler, Iversen, & Smith, 2022;Sanders, Brandt, & Binder, 2010). While traditional narrative methods such as (group) interviews are most common, co-design methods are increasingly adopted with people with cancer (e.g., Adler, Morales, Sotelo, & Magasi, 2022;Al-Mondhiry et al, 2022;Saxton et al, 2022).…”