Moving Beyond the Rhetoric of Shared Decision-Making: Designing Personal Health Record Technology With Young Adults With Type 1 Diabetes.

Objectives: Engaging young adults with type 1 diabetes (T1D) in the self-management of daily tasks and decision-making provides opportunities for positive health outcomes. However, emerging adulthood and care transitions are associated with decreased clinic attendance and diabetes complications. Shared decision-making (SDM) is an optimal approach for health decisions; however, it has been difficult to implement in practice. Personal health record (PHR) technology is a promising approach for overcoming such barriers. Still, today, PHRs have yet to root themselves into care and present an opportunity for improvement in SDM and engagement in self-management decision-making. The objective of this study was to confirm a functional model of an integrated shared decision-making-personal health record system (e-PHR) by young adults with T1D and care providers.

Methods: User-centred design approach whereby young adults with T1D, 18 to 24 years of age, and care providers matched PHR functions for the SDM process to confirm an e-PHR functional model.

Results: An e-PHR functional model justified by young adults (n=7) and providers (n=15) was confirmed. The conceptual design was architected within an interconnected digital health ecosystem and integrated 23 PHR functionalities for SDM with a moderate level of agreement between patients and providers (Cohen kappa 0.60 to 0.74).

Conclusions: The establishment of an e-PHR functional model is a precursor to system design requirements. Results highlight the conceivable value of integrating SDM into PHRs for engagement of young adults with T1D in self-management decision-making. Design implications highlight key challenges for future research and system development, including information exchange across disparate systems, usability considerations and system intelligence for information personalization and decision-support tools.