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

BMC Medical Informatics and Decision Making

Research Article

Matthew Menear¹  Maman Joyce Dogba²  Aubri S. Hoffman³  Robert J. Volk⁴  Heather Colquhoun⁵  Angela Fagerlin⁶  Lynne Haslett⁷  Sophie Dupéré⁸  Noah M. Ivers⁹  Carrie A. Levin^1,10  Selma Chipenda Dansokho^1,11  Thierry Provencher^1,11  Jean-Sébastien Renaud^1,12  Anik M. C. Giguere^1,13  Michèle Dugas^1,14  Gratianne Vaisson^1,14  Marie-Ève Trottier^1,14  Holly O. Witteman^1,15  Jean Légaré^1,16  France Légaré^1,17  Dawn Stacey^1,18 

[1] Department of Family Medicine and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec, QC, Canada;Research Centre of the CHU de Québec, CHU de Québec, 10 de l’Espinay, G1V 0A6, Quebec, QC, Canada;Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Department of Health Services Research, The MD Anderson Cancer Center, FCT9.5028, 1400 Pressler Street, 77030, Houston, TX, USA;Department of Health Services Research, The University of Texas MD Anderson Cancer Center, 1400 Pressler St., 77230, Houston, TX, USA;Department of Occupational Science and Occupational Therapy, Faculty of Medicine, University of Toronto, 160-500 University Ave, M5G 1V7, Toronto, ON, Canada;Department of Population Health Sciences, University of Utah, 295 Chipeta Way, Williams Building, Room 1C448, 84132, Salt Lake City, UT, USA;East End Community Health Centre, 1619 Queen Street East, M4L 1G4, Toronto, ON, Canada;Faculty of Nursing, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;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, M5S1B2, Toronto, ON, Canada;Department of Family and Community Medicine, Institute of Health Policy, Management and Evaluation, University of Toronto, 500 University Ave, M5G1V7, Toronto, ON, Canada;Healthwise, Incorporated, 40 Court St, Suite 300, 02108, Boston, MA, USA;Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Quebec Centre for Excellence on Aging, Research Centre of the CHU de Quebec, St-Sacrement Hospital, 1050, chemin Ste-Foy, G1S 4L8, Quebec City, QC, Canada;Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Research Centre of the CHU de Québec, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Office of Education and Professional Development, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Research Centre of the CHU de Québec, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Patient Partner, 403 rue des Érables, G0A 2R0, Neuville, Québec, Canada;Research Centre of the CHU de Québec, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, G1V 0A6, Quebec City, QC, Canada;School of Nursing and Ottawa Hospital Research Institute, University of Ottawa, 451 Smyth Road, K1H8M5, Ottawa, ON, Canada;

关键词: Patient engagement;    Vulnerable populations;    Marginalized populations;    Decision aids;    Shared decision making;   

DOI  :  10.1186/s12911-016-0399-8

 received in 2016-05-23, accepted in 2016-12-15,  发布年份 2017

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© The Author(s). 2017