Bazzano Alessandra N, Noel Lesley-Ann, Patel Tejal, Dominique C Chantel, Haywood Catherine, Moore Shenitta, Mantsios Andrea, Davis Patricia A
Department of Social, Behavioral, and Population Sciences, Tulane University School of Public Health and Tropical Medicine, New Orleans, LA, United States.
College of Design, North Carolina State University, Raleigh, NC, United States.
JMIR Form Res. 2023 Feb 28;7:e43101. doi: 10.2196/43101.
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.
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.
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.
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.
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.
健康不平等源于经济机会、环境、获得医疗服务的机会以及其他社会决定因素方面长期存在的不公正差异。由于这些健康不平等现象，新冠疫情对服务不足的人群产生了 disproportionately 的影响，尤其是有色人种、被监禁和曾经被监禁的个人，以及那些无法与他人保持身体距离的人。然而，受健康差距和疫情影响最严重的人群，无论是作为研究人员还是参与者，都不常参与研究，导致在改善健康公平方面进展缓慢。建立促进历史上被排斥人群参与的方法对于通过以患者为中心的健康研究改善健康公平至关重要。
本研究旨在评估以公平为中心的设计思维（EDT）在让社区成员参与与新冠疫情相关的研究优先级确定方面的应用。通过过程评估和定性方法评估了共同设计方法以及随后可用于参与的工具包的制作。
采用过程评估和定性探究，运用反思性主题分析来研究 EDT 的应用。患者社区成员和利益相关者在为期一年的数字过程中与设计和健康研究人员远程合作，共同创建能力建设工具，以确定关于新冠疫情对健康结果影响的研究议程。通过一系列 3 次研讨会，5 名社区合作伙伴参与了 EDT 活动，以确定其社区健康和福祉面临的关键挑战。随后的工具在 10 名健康研究人员中进行了测试，他们在 2 次研讨会过程中提供了关键意见。在过程评估以及最终确定以公平为中心的社区参与研究工具包时，使用了对共同设计者的访谈、项目材料和反馈会议。使用反思性主题分析对共同设计过程、会议、研讨会和访谈的数据进行分析，以确定突出主题。
过程评估说明了 EDT 共同设计过程如何提供一种方法，让患者合作伙伴和社区利益相关者参与围绕新冠疫情的健康相关研究。参与者对设计思维方法表示满意，包括创造性活动和迭代共同设计，认为这是一种合作方式。主题分析确定了 3 个关键主题：真实伙伴关系的价值、通过设计建立信任和同理心，以及围绕影响历史上代表性不足和投资不足社区的健康和社会问题促进坦诚对话。
该项目满足了测试 EDT 策略以促进在健康研究议程设定中实现包容性社区参与的需求，并为传统的自上而下模式提供了替代方案。尽管以人为本的设计在健康领域的应用越来越多，但很少有项目在设计思维方法中明确纳入公平性。使用方法和工具故意让代表性不足的利益相关者参与研究议程设定过程，并在研究人员和社区成员之间公平分享权力，可能会改善健康研究，最终改善健康公平。
