ENGAGING PATIENTS AND OTHER STAKEHOLDERS IN THE DEVELOPMENT OF PATIENT DECISION AIDS: COMPARISONS OF CURRENT PRACTICES WITH USER-CENTERED DESIGN
Methods: Our interdisciplinary team of researchers, patients, caregivers, clinicians, and decision aid developers conducted a systematic review according to the Cochrane Handbook and PRISMA reporting guidelines. Two independent reviewers assessed each article’s eligibility. Eligible articles described either the development of a patient decision aid or the development of any patient-centered tool that had been explicitly developed through a process of user-centered design. We created a structured data extraction form, refined it by consulting with 15 domain experts outside our team, and conducted four rounds of pilot testing. Two independent reviewers extracted data into a predetermined matrix, discussing questions at regular team meetings and reconciling any differences in extracted data. We analyzed preliminary data from all articles for which data had been fully extracted and reconciled thus far, calculating descriptive frequencies and conducting exploratory tests (Chi-squared with Yates continuity corrections or Fisher’s exact) to compare frequencies of practices employed in the development of patient decision aids with frequencies of practices employed when applying user-centered design to the development of other patient-centered tools.
Results: Within our preliminary data set of 121 articles, 100 (83%) described the development of a patient decision aid while 21 (17%) described a user-centered design process to develop another type of patient-centered tool. Descriptions of end user involvement within development practices differed between the two groups. For example, articles describing the development of a patient decision aid were less likely to describe involving end users in a content or format review prior to pilot testing (17/100=17%, 9/21=43%, Chi-squared(1)=8.5, p=.004), conducting pilot or usability testing with end users (48/100=48%, 18/21=86%, Fisher’s exact p=.017), and were also less likely to describe an iterative development process (43/100=43% , 21/21=100%, Chi-squared(1)=20.40, p<.001).
Conclusions: Descriptions of end user engagement within the development of patient decision aids differ from descriptions of practices within user-centered design. Further research will determine whether such differences truly reflect differing practices or merely differing descriptions, as well as whether any differences in development are associated with differences in outcomes.