Patient and Family Engagement in the Design of a Mobile Health Solution for Pediatric Asthma: Development and Feasibility Study

Abstract

BackgroundAsthma is a highly prevalent, chronic disease with significant morbidity, cost, and disparities in health outcomes. While adherence to asthma treatment guidelines can improve symptoms and decrease exacerbations, most patients receive care that is not guideline-based. New approaches that incorporate shared decision-making (SDM) and health information technology (IT) are needed to positively impact asthma management. Despite the promise of health IT to improve efficiency and outcomes in health care, new IT solutions frequently suffer from a lack of widespread adoption and do not achieve desired results, as a consequence of not involving end-users in design.ObjectiveTo describe a case study of a pediatric asthma SDM health IT solution’s development and demonstrate a methodology for engaging actual patients and families in IT development. Perspectives are shared from the vantage point of the research team and a parent of a child with asthma, who participated on the development team.MethodsWe adapted user-centric design principles to engage actual users across three main development phases: project initiation, ideation, and usability testing. To facilitate the necessary level of user engagement, our approach included: (1) a Development Workgroup consisting of patients, caregivers, and providers who met regularly with the research team; and (2) “real-world users” consisting of patients, caregivers, and providers recruited from a variety of care locations, including safety-net clinics.ResultsUsing this methodology, we successful partnered with asthma patients and families to create an interactive, digital solution called Carolinas Asthma Coach. Carolinas Asthma Coach incorporates SDM principles to elicit patient information, including goals and preferences, and provides health-literate, tailored education with specific guideline-based recommendations for patients and their providers. Of the patients, caregivers, and providers surveyed, 100% (n=60) said they would recommend Carolinas Asthma Coach to a friend or colleague. Qualitative feedback from users provided support for the usability and engaging nature of the app.ConclusionsThis project demonstrates the feasibility and benefits of deploying user-centric design methods that engage real patients and caregivers throughout the health IT design process.

Evaluating health service outcomes of public involvement in health service design in high-income countries: a systematic review

“…There were no definitions or conceptualisation of public involvement in almost half of articles ( n = 43, 46.2%) [ 40 – 82 ]. Where reported, public participant numbers ranged from 4 [ 83 ], to an estimated 1200 [ 84 ], though no numbers were given in 13 articles (14.0%) [ 45 , 47 , 49 , 58 , 69 , 72 – 74 , 77 , 85 – 88 ], and incomplete or estimated numbers were provided in a further 25 (26.9%) [ 40 , 43 , 44 , 50 , 51 , 56 , 57 , 61 – 63 , 66 , 76 , 82 , 84 , 89 – 99 ]. Some authors provided demographic data of public participants, such as age, gender, medical condition and/or race, however, there was no detail provided in more than half of articles ( n = 52, 55.9%) [ 37 , 38 , 40 , 41 , 43 – 51 , 55 , 58 , 59 , 61 , 63 , 66 , 68 , 69 , 71 – 74 , 77 , 79 , 81 – 88 , 93 , 95 – 110 ].…”

Development and Feasibility of a Mobile Asthma App for Children and Their Caregivers: Mixed Methods Study

“…An interactive digital solution study showed the feasibility and benefits of deploying user-centric design methods that engage real patients and caregivers throughout the health technology design process [ 29 ]. Another study proposed a paradigm shift—from providing features that are easy to implement technologically to using an approach in which apps are designed to deliver theoretically grounded preferred components [ 30 ]. This app was developed and modified based on theoretically grounded preferred components of our previous studies [ 12 , 13 ].…”

Engager les patients dans leurs soins à travers une application mobile : le projet Concerto

“…Globalement, ces démarches s'inscrivent dans les techniques de développement agile et de design centré sur les besoins des utilisateurs, permettant d'aboutir rapidement à un résultat conforme aux attentes. 10 Enjeux liés à la réutilisation de l'information des SIH Les aspects techniques relatifs aux fonctions d'arrière-plan de l'application (back-end, notamment la logique de communication avec le SIH) ne seront pas abordés en détail ici. Toutefois, il est important de souligner que les enjeux majeurs ont concerné l'interopérabilité (développer Concerto pour le rendre compatible avec d'autres SIH dans le futur), la sécurité (connecter une tablette au SIH) mais surtout la transformation des données présentes dans le SIH en information faisant sens pour les patients.…”