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

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.

Towards A Framework for Implementing Remote Patient Monitoring From an Integrated Care Perspective: A Scoping Review

“…The 28 selected studies spanned across 10 different nations (ie, country where the study was conducted or, if not stated, first author institution's country) -USA (13 studies), 11,14,[29][30][31][32][33][34][35][36][37][38][39] Italy (3), [40][41][42] Netherlands (3), [43][44][45] Canada (2), 46,47 France (2), 48,49 Austria, 50 Finland, 51 Germany, 52 Norway, 53 and Scotland. 54 Concerning the diseases, conditions or the specific groups of patients addressed, these selection of studies focuses predominantly (71.4%) on chronic conditions (20) ie, on generalized chronic patients' management, 43,46,49 heart failure (HF), 29,36,45,[50][51][52]54 chronic obstructive pulmonary disease (COPD), 40,45,53 cancer, 37,39,48 diabetes, 33 amyotrophic lateral sclerosis, 44 dementia,…”

“…Conceptual Models for Integrated Care Implementation of Remote Patient Monitoring Articles included in conceptual models' analysis can be grouped into three categories, according to the main purpose of the study: (a) conceptual extension of an implemented initiative 46,48,50 ; (b) expert recommendations 30,36,39,40,49 ; and (c) RPM-specific business model proposal. 43 Conceptual extensions derive from projects already implemented, pinpointing challenges and/or inefficiencies incurred in the past.…”

“…30,40 Geography, community context and language are also major determinants of technological acceptance. 39,46,55 Service Delivery Patient education and self-monitoring promotion are transversal themes among studies. During enrolment and throughout intervention phases, individuals (and caregivers) are instructed on correctly using TM equipment, educated about their condition, and presented with selfmanagement opportunities, 50 contributing to increase therapeutic adherence.…”

“…30,43 Technologies & Medical Products In most studies, patient portals, mobile-based apps, and TM devices are core technological components. Using a smartphone, tablet or web-based platform, one can acquire vital signs through TM devices, 43 send messages, collect electronic patient reported outcomes (e-PROs), 39 schedule appointments, provide educational materials, storage exam results, and/or check/deliver reminders. 48 Aronoff-Spencer et al 39 At a higher level of technological coordination, Modre-Osprian et al 50 proposes a health data centre, an interoperable information system capable of processing and analysing data, detecting upcoming adverse events and producing action triggers, through artificial intelligence-driven decision support systems.…”

“Don't drop the patient:” Health information in a postpandemic world

“…In our own work, we have customarily built this understanding through unobtrusive observation, stakeholder interviews, and by engaging in participatory codesign events (McComsey et al, 2020). We have then turned toward translating our understanding into functional designs through research, ideation, and prototype development, after which we follow an iterative, self-correcting cycle of refinement, implementation, and testing (Aronoff-Spencer et al, 2022). In medicine, systems built following human-centered design principles produce fewer errors, are safer, are more easily learned, more easily used, are more time efficient, and do a better job of reducing clinician burnout when compared to systems built through more top-down, technology-centric approaches (Carayon, 2012;Leonard et al, 2004;National Academies of Science, Engineering, and Medicine, 2019;Vicente, 2003).…”