Health inequalities are rooted in historically unjust differences in economic opportunity, environment, access to healthcare services, and other social determinants. As a result, the COVID-19 pandemic disproportionately affected underserved populations, notably people of color, incarcerated and formerly incarcerated individuals, and those unable to physically distance. However, people most heavily impacted by health disparities, and by the pandemic, are not frequently engaged in research, either as researchers or participants, resulting in slow progress towards improving health equity. Establishing ways to foster engagement of historically excluded people is crucial to improving health equity through patient-centered health research.
The objective of this study was to assess the use of equity-centered design thinking (EDT) to engage 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 was assessed through process evaluation and qualitative methods.
Process evaluation and qualitative inquiry, using reflexive thematic analysis, was undertaken to examine the use of equity centered design thinking. Patient community members and stakeholders partnered remotely with design and health researchers in a year-long digital process to co-create capacity building tools for research agenda-setting related to the impact of COVID-19 on health outcomes. Through a series of three workshops, five community partners engaged in equity-centered design thinking activities to identify critical issues for health and well-being of their communities. The subsequent tools were tested with health researchers who provided critical input over the course of two workshops. Interviews, project materials, and feedback sessions were used in 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 also analyzed using reflexive thematic analysis to identify salient themes.
Process evaluation illustrated ways that the EDT co-design offered an approach to engage patient partners and community stakeholders in health-related research around COVID-19. Participants expressed satisfaction with design thinking approaches, including creative activities and iterative co-design, as a means of working together. Thematic analysis identified three 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 a 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 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.