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. Health inequalities are rooted in historically unjust differences in economic opportunities, environment, access to health care services, and other social determinants. In particular, structural racism continues to be a key determinant of health in the United States . Owing tPatient-centered outcomes research (PCOR) and comparative effectiveness research (CER) are important approaches for identifying ways to prevent and mitigate ill health, where research priorities and agendas originate from authentic patient needs and preferences . Patientwith rather than for people who will use them  you get to know them as a real person, you get to know them not just a professor or...this lady who runs a research program. I got a chance to feel a part of her, get a real sense of her and that just brought on a different [way]...how you feel about participating in the workshop and how successful you want it to be because you know, people are being real.Community Partner 1During the second workshop on Rapid Critical Utopian Action Research activities, the participants were exposed to future thinking, which shifted their perspective to “dreambuild” a positive future. They thought of the advice they would give, such as urging the people in 2019 to see their primary care physician, considering how interrupted routine medical care would become owing to the pandemic, and to consider ways to protect their mental health. One of the participants focused on the financial stress the pandemic placed on the members of her community:I should’ve educated my community on financial freedom because I realized during the pandemic that that was the biggest part of everybody trying to be safe was being concerned about their finances.Community Partner 3In another future-focused activity, the participants imagined utopian and dystopian news headlines about health in the future. Through this activity, they reflected on some of their key takeaways from living through the COVID-19 pandemic and the introduction of the COVID-19 vaccine. A headline proposed by one of the participants is “Due to the research for the COVID vaccines, other safe and effective vaccines were made more quickly in the future.” Another participant proposed the following headline: “African Americans’ disbelief in the vaccine because of past history and the fear of being used as guinea pigs caused more death!” Furthermore, yet another participant proposed the headline “Americans no longer believe in the health care system.” Issues of trust and lack of, or lost, trust in health care emerged in most future headlines framed during this activity.Through an analysis of workshop notes and transcripts after the first 2 workshops and as part of the iterative design process, the research team sought to reduce technological challenges. The third workshop adopted a lower-technology approach using paper materials and prototyping with hands, rather than an approach involving heavy use of a computer.The “Mad Libs”-style activity in the third workshop titled “A COVID story” allowed the stakeholders to share stories of their friends and loved ones that tapped into community perceptions and norms. One of the stakeholders crafted the following story:My story is about Michelle...The biggest issue faced related to coronavirus is being separated from her family. She lost her father, and then she just lost her aunt within the past month from COVID-19. Her family is really going through a tough time with not being able to see her grandmother...having to minimize the funerals to just a few people was really devastating to their family. They just felt a lot of strain on their family. They feel like they should’ve been provided better services and instructions from the government.Community Partner 1The participants were particularly responsive to the story telling activity, with several noting that it would be an effective way to obtain feedback from members of their communities. Others echoed the sentiment that personal stories about oneself or someone in one’s life are always effective at getting people to speak more comfortably, particularly about sensitive topics.Eco-mapping, the activity in which the participants identified the resources that were around them and their families, spurred dialogue around the distrust of health care professionals and researchers. For the prototyping activity, a mainstay of design thinking approaches, the participants were provided a package of basic materials  and were asked to create something that could help with mental health during the pandemic. Creations included a bunker filled with food and medical supplies, a pod-finder phone app to locate nearby individuals to isolate with, a shrine to commemorate loved ones lost to COVID-19, and a time travel device to transport people to their happiest childhood memories. The participants described prototyping as follows:I didn’t think I was really artsy until I started doing these kinds of projects...I was like I’m not going to be able to do this, you guys, and they were like ‘Ok we’ve got 8 minutes and we got all this stuff right here’ and I’m like ‘This is stuff that children play with, I don’t know what to do with pipe cleaners,’ and you sit there and you see your imagination runs so wild. Like just in this moment, I thought of my god, this will be so great, a great idea to have this bunker underground...Community Partner 1However, one of the participants expressed being unsure what to do with the materials:I don't know anything to do. Looking at this was like me looking at Latin. It was just like, I don't know what to do with this.Community Partner 2After the workshops, one of the stakeholders reported that she had already spoken with the board of her community organization about design thinking and wanting to incorporate it into their work. Another individual described how she shared her knowledge of and interest in design thinking with friends and peers with whom she worked in her community:I always explain this to people, we were always taught to think inside the box, growing up in a society where your process was supposed to be the same—you learn your ABCs and your 123s and that was the way we were taught to live...now in design thinking you don’t have to think in that process if you don’t want to, it’s not the only process that’s the right process and that’s what design thinking is. It’s thinking outside the box. So whenever someone says ‘what made you think of that?’ I say ‘design thinking made me think of that! I just thought about how it’s always been done and I think about how we live today, and how can we enhance what’s always been done to how we can do it today...I was just thinking outside of the box, that’s all.’Community Partner 1Finally, the participants expressed that the EDT processes used for creating the toolkit could have value beyond the study for their own communities, for connectedness, and for the broader promotion of health equity. One of the community participants stated the following:I know the ultimate goal from this is to take what we’re bringing to this to the communities in some type of way, I’m very excited to see how that is actually going to come forth. The things we are discussing are actively the things people in our community are talking about behind closed doors anyway so if we could bring it to the actual community in some kind of way to have this kind of connectedness in the time of COVID where we can’t really be connected, I think that could be amazing at this time and bring about a connectedness in communities that we don’t really have...Community Partner 3The final step in the toolkit development process involved holding researcher usability and feedback workshops, with the support of partners at the Louisiana Public Health Institute and the patient-centered outcomes research network PCORnet . In an eOn the basis of the insights from all participants and reflections on the design activities piloted, the research team and community partners used the information from developmental evaluation to cocreate the Grounding Health Research in Design (GRID) Toolkit for use by health researchers and communities interested in adopting EDT. Stakeholders’ inputs on the utility of EDT activities and selections of activities that would be most impactful for use in community work informed the content included in the toolkit. The team reviewed the toolkit draft resulting from this process and contextualized the evaluation findings to ensure that the toolkit is community-engaged, stakeholder-driven, and adaptable to a variety of topical areas for research prioritization. Throughout the co-design process, specifically while working together to determine activities for inclusion in the toolkit, the participants discussed various equity approaches. The equity-based VISIONS Inc communication framework (presented in the first meeting and used throughout the project) established an environment in which there was room for controversy and discussion.The final GRID Toolkit includes the most salient activities identified in this study, with examples related to COVID-19. However, it can be used across various health topics and is intended to serve as a resource for improving the engagement of all people. Plain language and simplified text were used throughout the toolkit to improve usability and address questions raised by the community participants. Activities piloted through the workshops, refined through the process evaluation, and that benefited from health researcher feedback were included.The toolkit may be downloaded in its entirety from the website of the body that funded this research, the Patient Centered Outcome Research Institute , and froThe thematic analysis resulted in the identification of the 3 following salient themes, which are noted in value of establishing authentic partnerships, along with the process of building trust and empathy through EDT and how this fostered candid dialogue around health and social issues. Throughout their participation in the workshops and follow-up interviews, both researchers and community participants expressed the importance of engaging in a truly collaborative approach to research. In this context, the community participants vented their frustration with previous involvement in research that felt inauthentic and superficial in nature, as expressed in the following quote:Broadly, the thematic analysis of experiences across different categories of participants indicated the theme of the I’m so tired of researchers who get a grant, get a proposal, put it all together, get halfway through it and then you come to the community because you’re not interacting with the population you need to interact with and here you come, now you need help, right? But you should’ve been there in the beginning and the people should’ve been there from the beginning...And then you get very little information at the end, that’s the other problem, you know, they don’t go back and say this is what we got out of this.Community Partner 2Similarly, the health researchers who participated in a usability workshop for the EDT toolkit expressed that they were often less successful than they wanted to be in building authentic and equitable partnerships with community members or patient partners . One of the researchers described this as follows:That’s also something that’s very underestimated within research projects, within budgets, just that capacity, understanding that it takes hours of commitment to build that relationship and to build that trust and comfort with community partners. I think that was huge. We underestimate it...patient partners have been a part of [named health project] for years, but the same issue has been coming up frequently, which really is just them feeling underutilized, and also, they’re just not understanding what the research process is. They're feeling like...the concepts that are being discussed aren’t really tailored to include them in a way that’s meaningful. It’s an ongoing conversation we’ve had for years and so we’ve tried different solutions to address those issues, but it’s an evolving process.Health Researcher 3Another researcher spoke of the often-underestimated outcome of relationship building:We were all talking about how do you measure success and sometimes we’re looking for outcomes, but sometimes the outcome is actually the relationship to be able to continue to do other workHealth Research 2At the conclusion of the year-long EDT process, the community participants described the level and type of engagement in this project as perspective changing. Being involved in both the crafting of the design process and prioritization of topics was described as changing their perceptions of research and programs intended for their communities:I would encourage everybody to participate in research workshops to be able to know the steps in how these decisions are made and what effect it has on you and the people that make the decisions like us who participated in the research. I love to know that a real person like myself participated in this study or that study, how they come up to decide that this particular program or process is a good process for me is because someone like myself participated in the process that contained that information.Community Partner 1building trust and empathy. The community participants expressed that having the space and ability to discuss health-related community issues in partnership with researchers through EDT allowed for an in-depth exploration to identify key issues and potential solutions. Empathy and trust would also allow for realistic discussions about the needs of the participants.The second theme identified was One of the community participants raised concerns about how researchers, including those using EDT methods, needed to consider the perspectives and lives of those who were not present in the room. Building empathy was described as follows:From working with communities and neighborhood associations...everybody don’t have a tablet. Everybody just don’t have these things that we’re talking about. We have to think about, we truly have to think about the people who don’t, because we don’t really want to leave them out of certain things. We have to figure out how to include them in research and whatever. Just because they don’t have—they don’t have all the things with them...they might be in their head. We have to figure out how to get this stuff to work for them. That’s all I’m saying.Community Partner 2A health researcher who engaged in usability testing of the EDT toolkit spoke of expanding the understanding of community relationships through empathy and trust:Your comment made me reflect on the context of the community. It’s not just that interaction between the patient or the person that is interacting with the healthcare system. The fact that these people work in the community, they have jobs, they have different relationships with different people in their families, it’s a bigger ecosystem than just that transactional bidirectional relationship of an interview...this helped me think about that.Health Researcher 1During one of the workshops with the community participants where everyone shared photographs of ways in which the pandemic changed their life, a research team member shared a photograph of a bag of chips and a glass of wine illustrating the difficulty in eating healthy during the pandemic owing to changes in routine. A community participant later shared in a follow-up interview how the moment when the researcher shared this photo and narrative stuck with her as a moment when she felt more trust and empathy between the researchers and community members:I loved [researcher’s] photo ‘cause I was going to do something like that and thought I couldn’t. She is one of the leaders of this, and she was really real about who she is and what the pandemic is and how she had to see herself in a new light. The photo just stayed with me and I shared it with my friends to let them know what I encountered [working on this project].Community Partner 1The participants conveyed that everyone who was engaged from the start of the EDT process indicated the value placed on their involvement and the subsequent trust and empathy that were built. Other issues of trust were discussed in terms of experiences that the community participants had had with professionals involved in health care, which need to be addressed to build trust and empathy based on engagement and shared experiences:...we have a lot of trust issues when it comes to healthcare professionals or people involved in the healthcare field. The more we get to know you as a person in my community, the better of a relationship you will have with the people because they get to know that you’re a real person. The fact that you live in a community that you’re servicing, that always makes a big…I want to know if you live around here. Are you breathing the same air I breathe? Your house’s going to flood the same way mine flood or do you drive three hours to come here to my community [and] this person don’t have a clue about what’s going on? It does make a big impact on the people that serves for them to know who you are.Community Partner 1fostering candid dialogue around health through the use of EDT activities, especially with regard to issues that were exposed by the COVID-19 pandemic. For example, the participants in workshops spoke frankly about how the COVID-19 pandemic put a further strain on the trust of communities, particularly Black communities, in the individuals and institutions delivering health care. The following quotes illustrate the development of this theme:The final theme identified was ...they feel like they should’ve been provided better services and instruction from the government. They’re uncertain about whether they want to get a COVID-19 vaccine because, firstly, they don’t trust the healthcare system that’s provided by our government today. Barely anybody in my community relies on healthcare. I got to be honest. Most of them don’t have a primary care doctor. They rely on old-fashioned remedies for healing. Through COVID-19, I think it’s going to get more toward self healing in our Black communities because this has really put a strain on our trust to healthcare. I do believe that it’s going to become more like that for the Black community because this here was a horrible strain on our trust for healthcare from the government. They have mostly gotten their information, like I said, from each other and a few medical providers that they trust along the way.Community Partner 1Conversations where health issues were candidly discussed also included dialogue around the skepticism regarding health care providers and medicines:I’m diagnosed with diabetes, high blood pressure and cholesterol. [After my wife died] I did lose about 20 pounds. I was about 210, I think and I went down to 195 and some. I went for a three or four-month checkup, and then doc say, ‘Oh, all your signs looking good. I1C is lower than what mine is.’ He was saying, ‘Whatever you’ve been doing, keep doing,’ and I said, ‘Okay, I’ll keep not taking that meds. Oh, I ain’t been taking these meds for about three to four months.’ They say once you get diagnosed, it’s hard to get undiagnosed.Community Partner 4The tone of equitable interactions fostered an open discussion of health. The participants described communities focusing more on self-healing and the use of traditional practices passed down through families:I’ve never been in for taking shots, going to the hospital, because like I said, I come from old-fashioned remedies. New Orleans is a place where that has been our lifestyle. I got to be honest, I don’t have a primary care doctor. I don’t. 50 years old, I don’t have a primary care doctor. I pay for services when I desperately need them, and I provide myself with my own medical services, but there are medical professionals I trust. I do have a medical professional that I do trust. Now, I trust him because he has had to deal with the hard time of me.Community Partner 1Within one of the community partnered workshops, discussions revolved around how community members obtain COVID-19–related information. One of the participants reflected on frank discussions in her everyday life:talking about the vaccines in the community and stuff...that made me think about when I go and get my hair done, I always talk about it in there because nobody in there wants to get [the vaccine]. None of the hairdressers are planning to get it, most of the other people who are in there getting their hair done as they’re saying, they won’t either. They asked me a lot of questions, though, because I’ve had both shots at this point. I was thinking about too like where can you or how are we going to get to more people of color to address their concerns and issues with wanting to get the vaccine or not trust in the vaccine and things like that, being that everyone needs to get it, really, the majority of people.Community Partner 3We have described the cocreation of an equity-focused, human-centered design process to improve the engagement of underrepresented people, particularly Black Americans, in patient-centered health research on COVID-19, with assessment through process evaluation and qualitative thematic analysis. A group of engaged community members worked collaboratively with health researchers to create tools for research agenda setting, which were tested and refined. From the assessment and evaluation of the experiences of stakeholders around the practice and process of co-design and research prioritization, the team incorporated learning to produce a toolkit appropriate to the needs of underrepresented communities for research agenda setting. The tools can be used by communities and health researchers to improve engagement in research prioritization. Key themes identified included the value of establishing authentic partnerships, building trust and empathy, and fostering candid dialogue around health.In the United States, achieving health equity is highlighted as the primary focus of public health policies and practices , and theIn this study, we presented a process evaluation and thematic analysis assessing the engagement of community partners in health research prioritization using EDT. Our previous work established that design thinking or human-centered design has been increasingly used in health research, especially as a participatory means of working with community members on health research ; howeverFocusing on equity while incorporating design into public health and PCOR may provide a more appropriate approach to address health equity ,36. In tFew of the burgeoning efforts to incorporate design into health research  specificUsing an equity-based approach, this study sought to transform the research experience of the participants from a transactional to a meaningful engagement . The parThe free availability of the toolkit for download ensures that patient engagement researchers and community members can use and implement similar strategies. Future projects include expanding the toolkit to address other health issues severely impacting minoritized communities, such as perinatal mortality, and to provide a broader array of research environments for patient engagement.The limitations of this study include the challenges in replicating the specific personnel and resources used, including technological resources and capacity. There were some technological challenges that affected the full participation of all stakeholders in the workshop activities. Some stakeholders did not have access to reliable or stable Wi-Fi services, which necessitated adjustments. Workshop activities relied on video and screen sharing; however, the stakeholders sometimes had to join the workshop via telephone and were only able to listen in. Some stakeholders dialed in on a mobile phone while using iPads (Apple Inc) to view the screen via a Zoom link. In addition, several stakeholders contracted COVID-19 during the project period, marking challenges in attending and completing the workshop activities. These reflect real challenges when engaging community members as partners in research. In addition, inviting stakeholders through referrals may have resulted in individuals being more likely to respond positively to and participate more actively in the activities than would be the case when implementing these activities in community settings; however, social desirability bias is widespread in all study designs.This study evaluated EDT strategies for community engagement in health research agenda setting, which provide an alternative to traditional top-down models and foster inclusive approaches. Despite the increasing use of human-centered design in health, only a 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.