JMIR pediatrics and parenting · 2024
Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach.
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Marelli Ariane, Rozenblum Ronen, Bolster-Foucault Clara, Via-Dufresne Ley Alicia, Maynard Noemie, Amaria Khush, Galuppi Barb, Strohm Sonya, Nguyen Linda, Dawe-McCord Claire, Putterman Connie, Kovacs Adrienne H, Gorter Jan Willem
Аннотация
BACKGROUND: Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients.
OBJECTIVE: This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness.
METHODS: The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders.
RESULTS: We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget.
CONCLUSIONS: A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application.
TRIAL REGISTRATION: ClinicalTrials.gov NCT03852550; https://clinicaltrials.gov/study/NCT03852550.
OBJECTIVE: This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness.
METHODS: The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders.
RESULTS: We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget.
CONCLUSIONS: A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application.
TRIAL REGISTRATION: ClinicalTrials.gov NCT03852550; https://clinicaltrials.gov/study/NCT03852550.