ENGAGEMENT OF MEMBERS OF MARGINALIZED POPULATIONS IN THE DEVELOPMENT OF PATIENT DECISION AIDS AND OTHER PATIENT-CENTERED TOOLS

Purpose: To describe how research teams have engaged people from marginalized populations when developing patient decision aids or other patient-centered tools.

Methods: We conducted a systematic review according to the Cochrane Handbook and PRISMA reporting guidelines. Among a preliminary database of papers that described the development of a patient decision aid or a user-centred design process for a patient-centered tool, two independent reviewers identified articles that reported engagement of end users in the development process, and whether or not end users included people from marginalized populations. By marginalized populations, we mean people who may be disadvantaged due to psychological or cognitive characteristics (e.g., mental illness, low literacy), socio-economic characteristics (e.g., education, income, language) or who may experience discrimination or stigma for other reasons (e.g., alcohol or drug dependencies, sex work.) 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 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 Chi-squared or Fisher’s exact tests to compare development practices within studies that described including marginalized populations versus studies that did not.

Results: Among 121 eligible articles, 27 articles (22%) described development processes that engaged people from marginalized populations while 94 articles (78%) described development processes that did not clearly engage members of such populations. Engagement practices did not discernibly differ between studies that did or did not involve people from marginalized populations. For example, authors of both groups of articles described with similar frequencies conducting formal or informal needs assessments with end users (9/27=33%, 23/94=24%, Chi-squared(1)=0.45, p=.50) and pilot testing with end users (16/27=59%, 49/94=52%, Chi-squared(1)=0.19, p=.66). However, descriptions of recruitment processes differed between groups of articles. For example, studies that engaged people from marginalized populations were more likely to have described recruiting through community groups or community health teams (6/27=22%, 4/94=4%, Fisher’s exact p=.008).

Conclusions: To improve equity in patient and stakeholder engagement and in the development of tools such as patient decision aids, research teams may wish to consider community-based recruitment methods.