Abdulhussein Fatema S, Pinkney Susan, Görges Matthias, van Rooij Tibor, Amed Shazhan
Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada.
BC Children's Hospital Research Institute, Vancouver, BC, Canada.
JMIR Pediatr Parent. 2023 Jul 13;6:e46432. doi: 10.2196/46432.
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.
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.
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.
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.
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.
数字健康应用程序越来越多地可供糖尿病患者使用，但数据孤岛仍然存在。这就要求医疗保健提供者（HCP）和患者使用多个数字平台来访问健康数据。
在本研究中，我们收集了1型糖尿病（T1D）患儿及青少年的护理人员和儿科糖尿病医疗保健提供者对TrustSphere的用户体验设计的看法。TrustSphere是一个安全的、单点访问的综合性数字健康平台。
我们向加拿大不列颠哥伦比亚省的T1D患儿及青少年的护理人员和儿科糖尿病医疗保健提供者发放了基于网络的调查问卷。调查问卷采用顺序量表设计，并设有自由文本问题。调查项目评估了关键挑战、对数字信任和安全性的看法，以及数字糖尿病平台的潜在理想功能。
T1D患儿及青少年的护理人员（n = 99）和医疗保健提供者（n = 49）之间发现了类似的挑战，包括获得心理健康支持、糖尿病技术和设备数据的整合，以及与糖尿病团队就护理计划进行协作的能力。护理人员和医疗保健提供者确定了直接解决他们挑战的潜在功能，例如更易获取的糖尿病数据和糖尿病护理计划。护理人员比医疗保健提供者更信任以数字方式共享其孩子的数据。大多数护理人员和医疗保健提供者表示，T1D综合平台将支持协作式患者护理。
本研究中收集的护理人员和医疗保健提供者的观点将为综合性数字健康平台的早期原型提供参考。该原型将通过与护理人员和医疗保健提供者进行一系列可用性测试会议来展示和迭代，以确保该平台满足最终用户的需求。
