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.

Shared decision-making using personal health record technology: a scoping review at the crossroads.

OBJECTIVE: This scoping review aims to determine the size and scope of the published literature on shared decision-making (SDM) using personal health record (PHR) technology and to map the literature in terms of system design and outcomes. MATERIALS AND METHODS: Literature from Medline, Google Scholar, Cumulative Index to Nursing and Allied Health Literature, Engineering Village, and Web of Science (2005-2015) using the search terms "personal health records," "shared decision making," "patient-provider communication," "decision aid," and "decision support" was included. Articles ( n = 38) addressed the efficacy or effectiveness of PHRs for SDM in engaging patients in self-care and decision-making or ways patients can be supported in SDM via PHR. RESULTS: Analysis resulted in an integrated SDM-PHR conceptual framework. An increased interest in SDM via PHR is apparent, with 55% of articles published within last 3 years. Sixty percent of the literature originates from the United States. Twenty-six articles address a particular clinical condition, with 10 focused on diabetes, and one-third offer empirical evidence of patient outcomes. The tethered and standalone PHR architectural types were most studied, while the interconnected PHR type was the focus of more recently published methodological approaches and discussion articles. DISCUSSION: The study reveals a scarcity of rigorous research on SDM via PHR. Research has focused on one or a few of the SDM elements and not on the intended complete process. CONCLUSION: Just as PHR technology designed on an interconnected architecture has the potential to facilitate SDM, integrating the SDM process into PHR technology has the potential to drive PHR value.