Designing a Collaborative Patient-Centered Digital Health Platform for Pediatric Diabetes Care in British Columbia: Formative Needs Assessment by Caregivers of Children and Youths Living With Type 1 Diabetes and Health Care Providers

Fatema S Abdulhussein; Susan Pinkney; Matthias Görges; Tibor van Rooij; Shazhan Amed

doi:10.2196/46432

Designing a Collaborative Patient-Centered Digital Health Platform for Pediatric Diabetes Care in British Columbia: Formative Needs Assessment by Caregivers of Children and Youths Living With Type 1 Diabetes and Health Care Providers

JMIR Pediatr Parent. 2023 Jul 13:6:e46432. doi: 10.2196/46432.

Authors

Fatema S Abdulhussein^{1

2}, Susan Pinkney², Matthias Görges^{2

3}, Tibor van Rooij^{2

4}, Shazhan Amed^{1

2}

Affiliations

¹ Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada.
² BC Children's Hospital Research Institute, Vancouver, BC, Canada.
³ Department of Anesthesiology Pharmacology & Therapeutics, University of British Columbia, Vancouver, BC, Canada.
⁴ Department of Computer Science, University of British Columbia, Vancouver, BC, Canada.

PMID: 37440296
PMCID: PMC10375277
DOI: 10.2196/46432

Abstract

Background: Digital health apps are becoming increasingly available for people living with diabetes, yet data silos continue to exist. This requires health care providers (HCPs) and patients to use multiple digital platforms to access health data.

Objective: In this study, we gathered the perspectives of caregivers of children and youths living with type 1 diabetes (T1D) and pediatric diabetes HCPs in the user-centered design of TrustSphere, a secure, single-point-of-access, integrative digital health platform.

Methods: We distributed web-based surveys to caregivers of children and youths living with T1D and pediatric diabetes HCPs in British Columbia, Canada. Surveys were designed using ordinal scales and had free-text questions. Survey items assessed key challenges, perceptions about digital trust and security, and potential desirable features for a digital diabetes platform.

Results: Similar challenges were identified between caregivers of children and youths living with T1D (n=99) and HCPs (n=49), including access to mental health support, integration of diabetes technology and device data, and the ability to collaborate on care plans with their diabetes team. Caregivers and HCPs identified potential features that directly addressed their challenges, such as more accessible diabetes data and diabetes care plans. Caregivers had more trust in sharing their child's data digitally than HCPs. Most caregivers and HCPs stated that an integrative platform for T1D would support collaborative patient care.

Conclusions: Caregiver and HCP perspectives gathered in this study will inform the early prototype of an integrative digital health platform. This prototype will be presented and iterated upon through a series of usability testing sessions with caregivers and HCPs to ensure the platform meets end users' needs.

Keywords: Type 1; Type 1 diabetes; application design; challenge; child; design; development; diabetes; diabetic; digital health; digital solution; engagement; feature; needs assessment; patient engagement; patient need; pediatric; perception; privacy; secure; security; trust; usage; user centered; user need; youth.

©Fatema S Abdulhussein, Susan Pinkney, Matthias Görges, Tibor van Rooij, Shazhan Amed. Originally published in JMIR Pediatrics and Parenting (https://pediatrics.jmir.org), 13.07.2023.