Involving members of vulnerable populations in the development of patient decision aids: a mixed methods sequential explanatory study

Michèle Dugas,Sophie Dupéré,France Légaré,Anik Giguère ,Matthew Menear,Mikaël Trottier ,Maman Joyce Dogba,Selma Chipenda Dansokho,Aubri Hoffman ,Heather Colquhoun,Lynne Haslett,Jean Sébastien Renaud ,Angela Fagerlin,Robert J Volk,Dawn Stacey,Gratianne Vaisson,Carrie A Levin,Noah Ivers ,Thierry Provencher,Holly O Witteman

doi:10.1186/s12911-016-0399-8

Abstract

BackgroundPatient decision aids aim to present evidence relevant to a health decision in understandable ways to support patients through the process of making evidence-informed, values-congruent health decisions. It is recommended that, when developing these tools, teams involve people who may ultimately use them. However, there is little empirical evidence about how best to undertake this involvement, particularly for specific populations of users such as vulnerable populations.MethodsTo describe and compare the development practices of research teams that did and did not specifically involve members of vulnerable populations in the development of patient decision aids, we conducted a secondary analysis of data from a systematic review about the development processes of patient decision aids. Then, to further explain our quantitative results, we conducted semi-structured telephone interviews with 10 teams: 6 that had specifically involved members of vulnerable populations and 4 that had not. Two independent analysts thematically coded transcribed interviews.ResultsOut of a total of 187 decision aid development projects, 30 (16%) specifically involved members of vulnerable populations. The specific involvement of members of vulnerable populations in the development process was associated with conducting informal needs assessment activities (73% vs. 40%, OR 2.96, 95% CI 1.18–7.99, P = .02) and recruiting participants through community-based organizations (40% vs. 11%, OR 3.48, 95% CI 1.23–9.83, P = .02). In interviews, all developers highlighted the importance, value and challenges of involving potential users. Interviews with developers whose projects had involved members of vulnerable populations suggested that informal needs assessment activities served to center the decision aid around users’ needs, to better avoid stigma, and to ensure that the topic truly matters to the community. Partnering with community-based organizations may facilitate relationships of trust and may also provide a non-threatening and accessible location for research activities.ConclusionsThere are a small number of key differences in the development processes for patient decision aids in which members of vulnerable populations were or were not specifically involved. Some of these practices may require additional time or resources. To address health inequities, researchers, communities and funders may need to increase awareness of these approaches and plan accordingly.

Highlights

Patient decision aids aim to present evidence relevant to a health decision in understandable ways to support patients through the process of making evidence-informed, values-congruent health decisions
There are a small number of key differences in the development processes for patient decision aids in which members of vulnerable populations were or were not involved
After consolidating multiple articles from the same projects, our final data set consisted of 283 patient decision aid development projects

Summary

Introduction

Patient decision aids aim to present evidence relevant to a health decision in understandable ways to support patients through the process of making evidence-informed, values-congruent health decisions. Patient decision aids are a core tool of shared decision making These tools, often in the form of booklets, websites, videos, or a combination of media, are intended to help people make health decisions by providing information about the potential benefits and harms of their options, along with support for determining how well or poorly each option aligns with what matters to the person or people most affected by the decision. Involving users in the development of patient decision aids is recommended because, in principle, such involvement should help patient decision aids better meet the needs of the people for whom they are intended, rendering the tools more acceptable, comprehensible, useful, and usable. Despite the general recommendation in favor of involving people in the development of patient decision aids that they or others like them may use, there is little guidance and scant evidence regarding optimal practices for such involvement

Objectives

Methods

Results

Discussion

Conclusion