Racial disparities and social determinants shape health inequality in the United States. The COVID-19 pandemic disproportionately impacts vulnerable groups, particularly minority populations, incarcerated and formerly incarcerated people, and those unable to practice physical distancing. Those most likely to be impacted, such as African Americans with chronic health conditions, are excluded or underrepresented in research, both as participants and researchers. Groups that have been historically excluded or underrepresented must be included in research prioritization.
The project team proposes equity-centered design thinking (DT) to equip stakeholders with capabilities and mindsets for research agenda setting in relation to PCOR/CER related to COVID-19. Design thinking is a human-centered approach that draws from the designer’s toolkit to integrate the needs of people, parameters of possibility, and requirements for success. Louisiana, and New Orleans in particular, is an important environment in which to conduct this study given the high burden of the pandemic, African-American population, and distinct demographic characteristics relative to other parts of the country (higher rates of hypertension, diabetes, cardiovascular disease, and obesity). The team aims to co-create with stakeholders an equity-focused, human-centered design process to understand the needs and values of underrepresented stakeholders around PCOR/CER research and consequently produce an equity-centered DT toolkit that may be used by these communities to improve engagement in research prioritization.
The project will build an advisory core of patient community members, drawn from groups underrepresented in research including minorities, formerly incarcerated people, and women, who will engage in equity-centered DT activities and a research prioritization process. Partners will engage in co-design of an exercise to identify high-priority research issues and questions, with ethical considerations, for PCOR/CER related to COVID-19. The team will assess and evaluate the experiences of stakeholders around the process and incorporate learning from the evaluation to produce a set of tools appropriate to the needs of underrepresented communities for research agenda setting.
The outputs and outcomes will include a unique patient stakeholder group with experience using equity-centered design to engage in research agenda setting; evaluation of the utility of DT mindsets, skillsets, and processes for patient engagement; and development of a toolkit co-created by patients and stakeholders for wider dissemination that will increase engagement in research by underrepresented groups. The team will use the evaluation data to prototype, test, and improve the final toolkit disseminated through REACHnet and community partners. Presentations, posters, and peer-reviewed publications related to use of DT for research prioritization around COVID-19 will be disseminated. The toolkit itself will be disseminated to patient and stakeholder groups for engagement in research prioritization. Patients will be drawn from existing networks and explicitly involved in all phases of the project: setting out ways of working at the start, as key architects of workshop processes, during the evaluation, to inform the development of toolkit, and in dissemination. Partners include the Taylor Center for Social Innovation and Design Thinking and the Louisiana Public Health Institute as well as committed patient partners.