Moving beyond the rhetoric of Shared Decision Making: Designing Personal health Record technology with Young Adults with Type 1 Diabetes

Abstract 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; yet, 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. Objective 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, aged 18-24yrs, 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's kappa 0.60-0.74). Conclusion The establishment of a e-PHR functional model is a precursor to system design requirements. Results highlight the conceivable value of integrating SDM into PHR 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.