Improving the Engagement of Underrepresented People in Health Research Through Equity-Centered Design Thinking: Qualitative Study and Process Evaluation for the Development of the Grounding Health Research in Design Toolkit

被引:6
|
作者
Bazzano, Alessandra N. [1 ]
Noel, Lesley-Ann [2 ]
Patel, Tejal [1 ]
Dominique, C. Chantel [3 ]
Haywood, Catherine [4 ]
Moore, Shenitta [5 ]
Mantsios, Andrea [6 ]
Davis, Patricia A. [1 ]
机构
[1] Tulane Univ, Sch Publ Hlth & Trop Med, Dept Social Behav & Populat Sci, 1440 Canal St, New Orleans, LA 70112 USA
[2] North Carolina State Univ, Coll Design, Raleigh, NC USA
[3] Global Impact Board, New Orleans, LA USA
[4] Louisiana Community Hlth Outreach Network, New Orleans, LA USA
[5] Louisiana State Univ, Hlth Sci Ctr, New Orleans, LA USA
[6] Publ Hlth Innovat & Act, New York, NY USA
关键词
health equity; patient participation; health behavior; universal design; human-centered design; COVID-19; OUTCOMES RESEARCH; PARTICIPATORY RESEARCH; DISPARITIES; RACISM;
D O I
10.2196/43101
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Background: Health inequalities are rooted in historically unjust differences in economic opportunities, environment, access to health care services, and other social determinants. Owing to these health inequalities, the COVID-19 pandemic has disproportionately affected underserved populations, notably people of color, incarcerated and formerly incarcerated individuals, and those unable to physically distance themselves from others. However, people most strongly impacted by health disparities, and the pandemic, are not frequently engaged in research, either as researchers or as participants, resulting in slow progress toward improving health equity. Establishing ways to foster the engagement of historically excluded people is crucial to improving health equity through patient-centered health research. Objective: This study aimed to assess the use of equity-centered design thinking (EDT) for engaging community members in research prioritization related to COVID-19. The co-design methods and subsequent production of a toolkit that can be used for engagement were assessed through process evaluation and qualitative methods. Methods: Process evaluation and qualitative inquiry, using reflexive thematic analysis, were undertaken to examine the use of EDT. Patient community members and stakeholders remotely partnered with design and health researchers in a year-long digital process to cocreate capacity-building tools for setting agenda for research regarding the impact of COVID-19 on health outcomes. Through a series of 3 workshops, 5 community partners engaged in EDT activities to identify critical challenges for the health and well-being of their communities. The subsequent tools were tested with 10 health researchers who provided critical input over the course of 2 workshops. Interviews with co-designers, project materials, and feedback sessions were used in the process evaluation and finalization of an equity-centered toolkit for community engagement in research. Data from the co-design process, meetings, workshops, and interviews were analyzed using reflexive thematic analysis to identify salient themes. Results: Process evaluation illustrated how the EDT co-design process offered an approach to engage patient partners and community stakeholders in health-related research around COVID-19. The participants expressed satisfaction with design thinking approaches, including creative activities and iterative co-design, as a means of working together. Thematic analysis identified 3 key themes: the value of authentic partnerships, building trust and empathy through design, and fostering candid dialogue around health and social issues impacting historically underrepresented and underinvested communities. Conclusions: The project addressed the need to test EDT strategies for fostering inclusive community engagement in health research agenda setting and provided an alternative to traditional top-down models. Despite the increasing use of human-centered design in health, few projects explicitly include equity in design thinking approaches. The use of methods and tools to intentionally engage underrepresented stakeholders in the process of research agenda setting and equitably sharing power between researchers and community members may improve health research, ultimately improving health equity.
引用
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页数:15
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