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Accepted for/Published in: JMIR Pediatrics and Parenting

Date Submitted: Sep 5, 2023
Date Accepted: Apr 22, 2024

The final, peer-reviewed published version of this preprint can be found here:

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

Marelli A, Rozenblum R, Bolster-Foucault C, Via-Dufresne Ley A, Maynard N, Amaria K, Galuppi B, Strohm S, Nguyen L, Dawe-McCord C, Putterman C, Kovacs AH, Gorter JW

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

JMIR Pediatr Parent 2024;7:e51606

DOI: 10.2196/51606

PMID: 39352737

PMCID: 11480690

Development of a Patient-Centered Health Intervention Technology Platform to Improve Care Transition for Youth with Brain-Based Disabilities (BBD): The MyREADY TransitionTM BBD Mobile Application

  • Ariane Marelli; 
  • Ronen Rozenblum; 
  • Clara Bolster-Foucault; 
  • Alicia Via-Dufresne Ley; 
  • Noemie Maynard; 
  • Khush Amaria; 
  • Barb Galuppi; 
  • Sonya Strohm; 
  • Linda Nguyen; 
  • Claire Dawe-McCord; 
  • Connie Putterman; 
  • Adrienne H Kovacs; 
  • Jan Willem Gorter

ABSTRACT

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:

Our objective was to develop an interactive mobile application (App) intervention for patients with brain-based disabilities (BBD) to improve transition in care (TIC) readiness.

Methods:

The App was designed for patients 15-17 years of age with BBD, having the ability to use a mobile App. A multi-disciplinary team, an industry partner and Patient and Family Advisory Council (PFAC) 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 TIC skill sets. We used the Agile Iterative methodology to engage stakeholders.

Results:

We developed a novel, MyREADY TransitionTM 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 adjusted by PFAC requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 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.


 Citation

Please cite as:

Marelli A, Rozenblum R, Bolster-Foucault C, Via-Dufresne Ley A, Maynard N, Amaria K, Galuppi B, Strohm S, Nguyen L, Dawe-McCord C, Putterman C, Kovacs AH, Gorter JW

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

JMIR Pediatr Parent 2024;7:e51606

DOI: 10.2196/51606

PMID: 39352737

PMCID: 11480690

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