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

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. 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. 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). 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. Inciter de jeunes adultes atteints de diabète de type 1 (DT1) à l'autogestion des tâches quotidiennes et à la prise de décision permet d'obtenir une incidence positive pour la santé. Cependant, le passage à l'âge adulte et l’évolution des soins sont associées à une diminution de la fréquentation en clinique et des complications liées au diabète. La prise de décision partagée (PDP) est une approche optimale pour les décisions en lien avec la santé; cependant, elle a été difficile à mettre en œuvre dans la pratique. La technologie des dossiers de santé personnels (DSP) est une approche prometteuse pour surmonter ces obstacles. Aujourd'hui encor