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User involvement in the development of patient decision aids: A systematic review

Background: Multiple guidelines recommend involving patients and stakeholders in developing patient decision aids; however, best practices have yet to be identified. User-centered design is a well-established approach for engaging users in developing tools. We aimed to compile reports of patient decision aid development, using a user-centered design framework to synthesize evidence of existing practices and identify potential opportunities for improvement.Methods: We conducted searches in MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, the ACM library, IEEE Xplore and Google Scholar. We included articles describing (1) at least one development step of a patient decision aid, (2) at least one development step of user- or human-centered design of another patient-centered tool, and/or (3) evaluation of included decision aids and other patient-centered tools. Two analysts independently screened for inclusion, assessed study quality, and extracted data.Results: We included 623 articles describing 390 projects: 325 patient decision aid projects and 65 user-centered design projects. Fifty percent of patient decision aid projects reported involving users in at least one development step for understanding users, 35% in at least one development step for developing/refining the prototype and 84% in at least one development step for directly or indirectly observing prospective users’ interaction with the prototype. User-centered design projects reported 91%, 49% and 92%, respectively. Seventy-four percent of patient decision aid projects reported iterative development processes with median 3 development cycles (interquartile range 2-4); 92% of user-centered design projects reported iterativity, with median 3 development cycles (interquartile range 2-3). Sixty-six percent of patient decision aid projects and 89% of user-centered design projects reported preliminary evaluations such as usability testing or feasibility testing.Conclusions: We identified 3 key opportunities for improving the user-centeredness of patient decision aid development: involving users earlier to understand their needs, goals, strengths, limitations, context and intuitive processes; asking about and observing users’ interactions with developing versions of the decision aid; and reporting changes between iterative cycles. Additionally, developers of patient decision aids and other patient-centered tools may wish to more often involve patients, clinicians and other users in co-design of prototypes and in formal advisory or partnership roles.