User-centered design and the development of patient decision aids: protocol for 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.

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User Involvement in the Design and Development of Patient Decision Aids and Other Personal Health Tools: A Systematic Review

Medical Decision Making ◽

10.1177/0272989x20984134 ◽

2021 ◽

Vol 41 (3) ◽

pp. 261-274 ◽

Cited By ~ 2

Author(s):

Gratianne Vaisson ◽

Thierry Provencher ◽

Michèle Dugas ◽

Marie-Ève Trottier ◽

Selma Chipenda Dansokho ◽

...

Keyword(s):

Decision Aid ◽

Decision Aids ◽

User Involvement ◽

Personal Health ◽

User Centered Design ◽

Patient Decision Aid ◽

Design And Development ◽

Patient Decision Aids ◽

Patient Decision ◽

User Centered

Background When designing and developing patient decision aids, guidelines recommend involving patients and stakeholders. There are myriad ways to do this. We aimed to describe how such involvement occurs by synthesizing reports of patient decision aid design and development within a user-centered design framework and to provide context by synthesizing reports of user-centered design applied to other personal health tools. Methods We included articles describing at least one development step of 1) a patient decision aid, 2) user- or human-centered design of another personal health tool, or 3) evaluation of these. We organized data within a user-centered design framework comprising 3 elements in iterative cycles: understanding users, developing/refining prototype, and observing users. Results We included 607 articles describing 325 patient decision aid projects and 65 other personal health tool projects. Fifty percent of patient decision aid projects reported involving users in at least 1 step for understanding users, 35% in at least 1 step for developing/refining the prototype, and 84% in at least 1 step for observing users’ interaction with the prototype. In comparison, other personal health tool projects reported 91%, 49%, and 92%, respectively. A total of 74% of patient decision aid projects and 92% of other personal health tool projects reported iterative processes, both with a median of 3 iterative cycles. Preliminary evaluations such as usability or feasibility testing were reported in 66% of patient decision aid projects and 89% of other personal health tool projects. Conclusions By synthesizing design and development practices, we offer evidence-based portraits of user involvement. Those wishing to further align patient decision aid design and development with user-centered design methods could involve users earlier, design and develop iteratively, and report processes in greater detail.

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Systematic Development of Patient Decision Aids: An Update from the IPDAS Collaboration

Medical Decision Making ◽

10.1177/0272989x211014163 ◽

2021 ◽

pp. 0272989X2110141

Author(s):

Holly O. Witteman ◽

Kristin G. Maki ◽

Gratianne Vaisson ◽

Jeanette Finderup ◽

Krystina B. Lewis ◽

...

Keyword(s):

Decision Aid ◽

Decision Aids ◽

Rapid Development ◽

User Involvement ◽

User Centered Design ◽

Patient Decision Aid ◽

Patient Decision Aids ◽

Patient Decision ◽

Development Processes ◽

Systematic Development

Background The 2013 update of the evidence informing the quality dimensions behind the International Patient Decision Aid Standards (IPDAS) offered a model process for developers of patient decision aids. Objective To summarize and update the evidence used to inform the systematic development of patient decision aids from the IPDAS Collaboration. Methods To provide further details about design and development methods, we summarized findings from a subgroup ( n = 283 patient decision aid projects) in a recent systematic review of user involvement by Vaisson et al. Using a new measure of user-centeredness (UCD-11), we then rated the degree of user-centeredness reported in 66 articles describing patient decision aid development and citing the 2013 IPDAS update on systematic development. We contacted the 66 articles’ authors to request their self-reports of UCD-11 items. Results The 283 development processes varied substantially from minimal iteration cycles to more complex processes, with multiple iterations, needs assessments, and extensive involvement of end users. We summarized minimal, medium, and maximal processes from the data. Authors of 54 of 66 articles (82%) provided self-reported UCD-11 ratings. Self-reported scores were significantly higher than reviewer ratings (reviewers: mean [SD] = 6.45 [3.10]; authors: mean [SD] = 9.62 [1.16], P < 0.001). Conclusions Decision aid developers have embraced principles of user-centered design in the development of patient decision aids while also underreporting aspects of user involvement in publications about their tools. Templates may reduce the need for extensive development, and new approaches for rapid development of aids have been proposed when a more detailed approach is not feasible. We provide empirically derived benchmark processes and a reporting checklist to support developers in more fully describing their development processes. [Box: see text]

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Protocol for systematic review: patient decision aids for total hip and knee arthroplasty decision-making

Systematic Reviews ◽

10.1186/s13643-020-01549-6 ◽

2021 ◽

Vol 10 (1) ◽

Author(s):

Lissa Pacheco-Brousseau ◽

Marylène Charette ◽

Dawn Stacey ◽

Stéphane Poitras

Keyword(s):

Systematic Review ◽

Decision Making ◽

Knee Arthroplasty ◽

Patient Involvement ◽

Decision Aids ◽

Risk Of Bias ◽

Decision Making Process ◽

Patient Decision Aids ◽

Patient Decision ◽

Hip And Knee Arthroplasty

Abstract Background Total hip and knee arthroplasty are a highly performed surgery; however, patient satisfaction with surgery results and patient involvement in the decision-making process remains low. Patient decision aids (PtDAs) are tools used in clinical practices to facilitate active patient involvement in healthcare decision-making. Nonetheless, PtDA effects have not been systematically evaluated for hip and knee total joint arthroplasty (TJA) decision-making. The aim of this systematic review is to determine the effect of patient decision aids compared to alternative of care on quality and process of decision-making when provided to adults with hip and knee osteoarthritis considering primary elective TJA. Methods This systematic review will follow the Cochrane Handbook for Systematic Reviews. This protocol was reported based on the PRISMA-P checklist guidelines. Studies will be searched in CINAHL, MEDLINE, Embase, PsycINFO, and Web of Science. Eligible studies will be randomized control trial (RCT) evaluating the effect of PtDA on TJA decision-making. Descriptive and meta-analysis of outcomes will include decision quality (knowledge and values-based choice), decisional conflict, patient involvement, decision-making process satisfaction, actual decision made, health outcomes, and harm(s). Risk of bias will be evaluated with Cochrane’s risk of bias tool for RCTs. Quality and strength of recommendations will be appraised with Grades of Recommendation, Assessment, Development and Evaluation (GRADE). Discussion This review will provide a summary of RCT findings on PtDA effect on decision-making quality and process of adults with knee and hip osteoarthritis considering primary elective TJA. Further, it will provide evidence comparing different types of PtDA used for TJA decision-making. This review is expected to inform further research on joint replacement decision-making quality and processes and on ways PtDAs facilitate shared decision-making for orthopedic surgery. Systematic review registration PROSPERO CRD42020171334

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