Building an Equity-Centered Design Toolkit for Engaging Patients in Health Research Prioritization

In this project, an equity-centered design thinking process facilitated the engagement of people from communities underrepresented in the prioritization of health research on COVID-19 and increased the capacity for designers, researchers, and community members to work together across traditional boundaries. A partnership was formed between five patient partners and academic design and public health researchers to co-create a process and simple set of tools for health research on outcomes important to people’s lived experiences. During the COVID-19 pandemic, stakeholders participated in equity-centered design thinking activities through a series of virtual design workshops and meetings. The goal of these activities was to identify new designerly ways to understand significant issues that were affecting the health and well-being of communities severely impacted by health disparities. Following the conclusion of each workshop, interviews were conducted with the participants to obtain their input on the design thinking methodologies used and the overall process of co-design, and two further usability workshops were held with health researchers to gauge their perception of the resulting design tools. Because it is human-centered, multifaceted, and can be used via remote or in-person techniques, a design approach lends itself to improving patient experience in health research and comparative effectiveness research. An equity-centered design lens is crucial for ensuring that the people most likely to be impacted by health disparities are included in the service design transformation of healthcare. The experience of co-designing a process and toolkit for equity-centered community engagement in health research is presented.