title: Involving members of vulnerable populations in the development of patient decision aids: a mixed methods sequential explanatory study.
abstract: BACKGROUND
  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. 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.
  
  
  METHODS
  To 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.
  
  
  RESULTS
  Out 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.
  
  
  CONCLUSIONS
  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 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.
authors.affiliation: Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.|Research Centre of the CHU de Québec, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
authors.forename: Michèle
authors.initials: M
authors.lastname: Dugas
authors.affiliation: Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.|Research Centre of the CHU de Québec, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
authors.forename: Marie-Ève
authors.initials: MÈ
authors.lastname: Trottier
authors.affiliation: Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
authors.forename: Selma
authors.initials: S
authors.lastname: Chipenda Dansokho
authors.affiliation: Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.|Research Centre of the CHU de Québec, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
authors.forename: Gratianne
authors.initials: G
authors.lastname: Vaisson
authors.affiliation: Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
authors.forename: Thierry
authors.initials: T
authors.lastname: Provencher
authors.affiliation: Department of Occupational Science and Occupational Therapy, Faculty of Medicine, University of Toronto, 160-500 University Ave, Toronto, ON, M5G 1V7, Canada.
authors.forename: Heather
authors.initials: H
authors.lastname: Colquhoun
authors.affiliation: Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
authors.forename: Maman Joyce
authors.initials: MJ
authors.lastname: Dogba
authors.affiliation: Faculty of Nursing, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
authors.forename: Sophie
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authors.lastname: Dupéré
authors.affiliation: Department of Population Health Sciences, University of Utah, 295 Chipeta Way, Williams Building, Room 1C448, Salt Lake City, UT, 84132, USA.
authors.forename: Angela
authors.initials: A
authors.lastname: Fagerlin
authors.affiliation: Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.|Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.|Quebec Centre for Excellence on Aging, Research Centre of the CHU de Quebec, St-Sacrement Hospital, 1050, chemin Ste-Foy, Quebec City, QC, G1S 4L8, Canada.
authors.forename: Anik M C
authors.initials: AM
authors.lastname: Giguere
authors.affiliation: East End Community Health Centre, 1619 Queen Street East, Toronto, ON, M4L 1G4, Canada.
authors.forename: Lynne
authors.initials: L
authors.lastname: Haslett
authors.affiliation: Department of Health Services Research, The MD Anderson Cancer Center, FCT9.5028, 1400 Pressler Street, Houston, TX, 77030, USA.
authors.forename: Aubri S
authors.initials: AS
authors.lastname: Hoffman
authors.affiliation: Family Practice Health Centre, Institute for Health Systems Solutions and Virtual Care and Women's College Research Institute, Women's College Hospital, 76 Grenville St, Toronto, ON, M5S1B2, Canada.|Department of Family and Community Medicine, Institute of Health Policy, Management and Evaluation, University of Toronto, 500 University Ave, Toronto, ON, M5G1V7, Canada.
authors.forename: Noah M
authors.initials: NM
authors.lastname: Ivers
authors.affiliation: Research Centre of the CHU de Québec, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.|Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
authors.forename: France
authors.initials: F
authors.lastname: Légaré
authors.affiliation: Patient Partner, 403 rue des Érables, Neuville, Québec, G0A 2R0, Canada.
authors.forename: Jean
authors.initials: J
authors.lastname: Légaré
authors.affiliation: Healthwise, Incorporated, 40 Court St, Suite 300, Boston, MA, 02108, USA.
authors.forename: Carrie A
authors.initials: CA
authors.lastname: Levin
authors.affiliation: Department of Family Medicine and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec, QC, G1V 0A6, Canada.|Research Centre of the CHU de Québec, CHU de Québec, 10 de l'Espinay, Quebec, QC, G1V 0A6, Canada.
authors.forename: Matthew
authors.initials: M
authors.lastname: Menear
authors.affiliation: Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.|Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
authors.forename: Jean-Sébastien
authors.initials: JS
authors.lastname: Renaud
authors.affiliation: School of Nursing and Ottawa Hospital Research Institute, University of Ottawa, 451 Smyth Road, Ottawa, ON, K1H8M5, Canada.
authors.forename: Dawn
authors.initials: D
authors.lastname: Stacey
authors.affiliation: Department of Health Services Research, The University of Texas MD Anderson Cancer Center, 1400 Pressler St., Houston, TX, 77230, USA.
authors.forename: Robert J
authors.initials: RJ
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authors.affiliation: Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada. holly.witteman@fmed.ulaval.ca.|Research Centre of the CHU de Québec, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada. holly.witteman@fmed.ulaval.ca.|Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada. holly.witteman@fmed.ulaval.ca.
authors.forename: Holly O
authors.initials: HO
authors.lastname: Witteman
mesh_terms: D003661:Decision Support Techniques; D006302:Health Services Research; D006801:Humans; D010358:Patient Participation; D035862:Vulnerable Populations
keywords: Decision aids; Marginalized populations; Patient engagement; Shared decision making; Vulnerable populations