Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Feb 16, 2023
Date Accepted: Jun 12, 2023
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Needs Assessment by Caregivers of Children and Youth Living with T1D and Health Care Providers to Inform the Design of a Collaborative Patient-Centered Digital Health Platform for Pediatric Diabetes Care in British Columbia
ABSTRACT
Background:
Digital health applications are becoming increasingly available for people living with diabetes, yet data silos continue to exist. This requires healthcare providers (HCP) and patients to use multiple digital platforms to access health data. This study engaged caregivers of children living with type 1 diabetes (T1D) and pediatric diabetes HCP in the user-centred design of TrustSphere, a secure, single point-of-access integrative digital health platform.
Objective:
In this study, we describe the TrustSphere Consortium’s user-centred design approach at the conceptual phase of developing our digital health platform. The objective of this study was to gather perspectives of caregivers of children and youth living with T1D and pediatric diabetes HCP on their current challenges, barriers and facilitators of digital technology trust and usage for clinical care, and desired features of a single point-of-access secure integrative digital diabetes platform.
Methods:
Online surveys were distributed to caregivers of children living with T1D and pediatric diabetes HCP in British Columbia (BC), Canada. 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 living with T1D (n=99) and HCP (n=49), including access to mental health support, integration of diabetes technology and device data, and the ability to collaborate on care plans with the diabetes team. Caregivers and HCP 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 HCP. Most caregivers and HCP 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 via a series of usability testing sessions with HCP and caregivers to ensure the platform meets end-users needs.
Citation
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Copyright
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