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BMC Med Inform Decis Mak. 2017 Jan 19;17(1):12. doi: 10.1186/s12911-016-0399-8.

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

Author information

1
Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
2
Research Centre of the CHU de Québec, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
3
Department of Occupational Science and Occupational Therapy, Faculty of Medicine, University of Toronto, 160-500 University Ave, Toronto, ON, M5G 1V7, Canada.
4
Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
5
Faculty of Nursing, Laval University, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada.
6
Department of Population Health Sciences, University of Utah, 295 Chipeta Way, Williams Building, Room 1C448, Salt Lake City, UT, 84132, USA.
7
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.
8
East End Community Health Centre, 1619 Queen Street East, Toronto, ON, M4L 1G4, Canada.
9
Department of Health Services Research, The MD Anderson Cancer Center, FCT9.5028, 1400 Pressler Street, Houston, TX, 77030, USA.
10
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.
11
Department of Family and Community Medicine, Institute of Health Policy, Management and Evaluation, University of Toronto, 500 University Ave, Toronto, ON, M5G1V7, Canada.
12
Patient Partner, 403 rue des Érables, Neuville, Québec, G0A 2R0, Canada.
13
Healthwise, Incorporated, 40 Court St, Suite 300, Boston, MA, 02108, USA.
14
Department of Family Medicine and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Quebec, QC, G1V 0A6, Canada.
15
Research Centre of the CHU de Québec, CHU de Québec, 10 de l'Espinay, Quebec, QC, G1V 0A6, Canada.
16
School of Nursing and Ottawa Hospital Research Institute, University of Ottawa, 451 Smyth Road, Ottawa, ON, K1H8M5, Canada.
17
Department of Health Services Research, The University of Texas MD Anderson Cancer Center, 1400 Pressler St., Houston, TX, 77230, USA.
18
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.
19
Research Centre of the CHU de Québec, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada. holly.witteman@fmed.ulaval.ca.
20
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.

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.

KEYWORDS:

Decision aids; Marginalized populations; Patient engagement; Shared decision making; Vulnerable populations

PMID:
28103862
PMCID:
PMC5244537
DOI:
10.1186/s12911-016-0399-8
[Indexed for MEDLINE]
Free PMC Article

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