JMIR Publications

ABSTRACT

Background:

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 improved health equity. Establishing ways to improve engagement of historically excluded people in health research is crucial to improving patient-centered health research.

Objective:

This study used an equity-centered design thinking (EDT) process to engage and build capacity of community members for participation in research prioritization for health equity related to COVID-19, co-producing a toolkit that can be used to address engagement in other health issues. The study aim was twofold, to explore participant experiences in the process and to produce a toolkit for dissemination through the partnership.

Methods:

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 workshops, 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. Stakeholder interviews and feedback sessions were used in evaluation and finalization of an equity-centered toolkit for community engagement in research. Data from the co-design process, convenings, workshops and interviews, were qualitatively analyzed to identify salient themes.

Results:

Study findings indicated that the EDT co-design process offered an effective and innovative approach to engage patient partners and community stakeholders in health-related research for priority setting. Participants reported satisfaction with the value placed on their involvement as genuine partners in the process, as well as appreciation of design thinking approaches, including creative activities and enjoyable workshop experiences. Key themes included the value of authentic partnerships in patient-centered outcomes research (PCOR), building trust and empathy through design, and fostering candid dialogue around broader health and social issues impacting historically underrepresented and underinvested communities. Findings from this study indicate that EDT can be an important and engaging approach for involving community members from minoritized communities in the research agenda-setting process. The resulting toolkit developed through the partnership can be utilized and adapted for other health issues beyond COVID-19.

Conclusions:

The study offers innovative EDT strategies for community engagement in health, and an alternative to traditional top-down research agenda setting. The toolkit co-created from this research process can enhance opportunities for utilizing equity-centered design thinking in more equitable patient and community engagement in research agenda setting.