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Parents' views about healthcare professionals having real-time remote access to their young child's diabetes data:
Barbara Kimbell1, David Rankin1, Ruth I Hart1
1Usher Institute, University of Edinburgh, Edinburgh, UK.
Insights
Parents see benefits in healthcare professionals remotely accessing their child's diabetes data, improving care and consultations. Real-time data sharing is supported for routine pediatric diabetes management, with attention to privacy and security.
Area of Science:
- Pediatric Endocrinology
- Digital Health
- Diabetes Management
Background:
- Type 1 diabetes management in young children presents unique challenges.
- Remote data sharing in pediatric diabetes care requires understanding parental perspectives.
Purpose of the Study:
- To explore parents' views on healthcare professionals remotely accessing their young child's insulin and glucose data.
- To inform the use of data sharing in routine pediatric diabetes care.
Main Methods:
- Qualitative descriptive analysis of interviews with 33 parents of children (aged 1-7 years) with type 1 diabetes.
- Participants were part of a randomized trial (KidsAP02) comparing hybrid closed-loop systems with sensor-augmented pump therapy.
Main Results:
- Parents reported benefits including reduced data uploading burden, improved consultations, and enhanced clinical support.
- Remote access facilitated telehealth consultations, found to be more suitable for young children, especially during the COVID-19 pandemic.
- Parents endorsed real-time data sharing for routine care, emphasizing the need for robust data access, security, and privacy protocols.
Conclusions:
- Real-time data sharing offers significant clinical, logistical, and quality-of-life advantages for pediatric diabetes care.
- Remote consultations enabled by data sharing may be particularly beneficial for young children.
- Successful implementation requires addressing ethical and cybersecurity concerns with a non-judgmental, collaborative approach to protect family privacy.
Objectives:
We explored parents' views about healthcare professionals having remote access to their young child's insulin and glucose data during a clinical trial to inform use of data sharing in routine pediatric diabetes care.
Research Design And Methods:
Interviews with 33 parents of 30 children (aged 1-7 years) with type 1 diabetes participating in a randomized trial (KidsAP02) comparing hybrid closed-loop system use with sensor-augmented pump therapy. Data were analyzed using a qualitative descriptive approach.
Results:
Parents reported multiple benefits to healthcare professionals being able to remotely access their child's glucose and insulin data during the trial, despite some initial concerns regarding the insights offered into everyday family life. Key benefits included: less work uploading/sharing data; improved consultations; and, better clinical input and support from healthcare professionals between consultations. Parents noted how healthcare professionals' real-time data access facilitated remote delivery of consultations during the COVID-19 pandemic, and how these were more suitable for young children than face-to-face appointments. Parents endorsed use of real-time data sharing in routine clinical care, subject to caveats regarding data access, security, and privacy. They also proposed that, if data sharing were used, consultations for closed-loop system users in routine clinical care could be replaced with needs-driven, ad-hoc contact.
Conclusions:
Real-time data sharing can offer clinical, logistical, and quality-of-life benefits and enhance opportunities for remote consultations, which may be more appropriate for young children. Wider rollout would require consideration of ethical and cybersecurity issues and, given the heightened intrusion on families' privacy, a non-judgmental, collaborative approach by healthcare professionals.
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