“We have to be looked at as partners. Not to be talked down to, or to be dismissed, but to be considered the experts on our bodies—because we are.” —Imani, person with Long COVID
Buzzwords abound in design and design research: participation, engagement, and inclusion are just a few swirling around increasingly at conferences, in articles, and in conversations with colleagues and partners. As a lover of processes and strategies for decentering the designer, I admit I use these words frequently too, and I am encouraged by the growing recognition that involving people in the design research and design process who have firsthand experience with a particular issue is essential to ensuring that design solutions respond to real wants, needs, and experiences.
However, not all participatory design processes are created equal. At Coforma, we often refer to Sherry Arnstein’s ladder of participation to clarify what we mean when we employ this word, and we push ourselves to create processes for working with people that are more equitable and restorative, and ultimately, lead to deeper insight and innovation.
An example of this is our Health+ Program, which applies human-centered design and research to cultivate solutions to the most pressing healthcare challenges. In 2022, in partnership with the US Department of Health and Human Services, our Health+ cycle focused on understanding the lived experiences of people impacted by Long COVID in order to identify solutions that could improve their quality of life and care.
Based on our past experiences working with people impacted by complex health issues and systemic disparities, we identified the following participation principles to guide our efforts. For us, it was important to be:
Trauma-responsive: We recognize that the people we’re engaging have likely experienced trauma, either as a result of or aside from their experience with Long COVID. We aim to create spaces that are safe, validating, and give participants control over their experience with us.
Relational: More than striving for participation, which could simply mean asking people to participate in one-off interviews, we strive to build relationships and work alongside others over time. We follow up with people, invite them back, and update them on the impact of their participation.
Humble: As researchers and designers, we can learn, develop insights, and advocate for change through the identification of solutions—but we recognize that we are not experts on the issue of Long COVID. We strive to learn from and alongside the actual experts—those who have lived experience and expertise.
Taking cues from these principles, here are three strategies we employed for creating deeper and more meaningful participation.
Shape the Research Plan with Participants
At the outset of a typical design process, the design research team develops a research plan to guide all subsequent research activities. Crafting the research plan is quite literally the defining moment of the research process, as it determines what we will seek to learn about, how, and with whom. As you can imagine, it’s possible that a misstep at this point could mean missed opportunities to learn about pivotal parts of an experience, and gaps in research findings resulting in missed opportunities to create real, positive impact on people’s lives.
How do you know what you want to learn without learning about it first? Well, you ask the experts.
One of the very first actions we took on Health+ Long COVID—before we even began thinking about the full research plan—was facilitating a series of discovery workshops with people impacted by Long COVID. We wanted to hear first hand from them what they thought was the most important to learn. Through these workshops, which included landscape mapping, a listening session, brainstorming, and journey mapping, we built a foundational understanding of how Long COVID is defined, perceived, and experienced by people impacted by it, what they believe to be the key areas of inquiry and unanswered questions, and their ideas for high-impact solutions.
These conversations and exercises shaped our research plan. For example, while we had been aware of the psychological impacts of Long COVID from our background research, what we heard in these sessions went beyond anxiety and depression to include an impact on—and at times, complete loss of—one’s sense of identity. We built in time to understand the scope of this impact, which meant taking time to understand what someone’s life was like before their acute infection, not just after.
We also got feedback on our planned incentive amount at this time. We had been planning to compensate people $75 for a one-hour remote session, but based on insight from Long COVID advocates about the potential for participation to trigger Long COVID symptoms, we increased our incentive to $100 to account for the amplified burden of participation.
Developing and prioritizing a running list of topics with people with Long COVID to explore through subsequent research.
Ensure Participants Have Choice In and Control Over Their Experience
One of the tenets of a trauma-responsive approach is ensuring that participants have a sense of control over their experience. Already familiar with some of the health impacts of Long COVID, including cognitive dysfunction and post-exertional malaise, we wanted to ensure participation was as accessible as possible.
For the Long COVID cycle, we developed three different ways to engage—participating in a Zoom-based interview, completing a series of recorded audio diaries over the span of one week, or writing a “digital postcard” to share their experience of Long COVID with us. People could select which one worked best for them given the state of their health and personal preference.
Regardless of what option was selected, our participant prompts were as open-ended as possible to avoid imposing unhelpful limitations around their responses. Those participating in an interview had the option to send us a few photos in advance of our conversation depicting “what living with Long COVID looks like.”
These photos became the backbone for our interview. It underscored that they had control over what they wanted to discuss—not us—and it reduced the risk that we as researchers would impose our own priorities, and therefore miss information deemed critical to our participants, and ultimately, our audience.
Reviewing images shared by a participant of “what living with Long COVID looks like.”
Validate Draft Research Findings with Participants
After research concluded, we began the process of analyzing and synthesizing what we heard into discrete insights and actionable recommendations for improving the quality of life and care for people with Long COVID.
In any sort of analysis, the perspectives and biases of those doing the interpretive work are inevitably going to shape the outputs. To mitigate this as much as possible, we circled back with participants once we had some rough drafts as a check to ensure we hadn’t skewed or misinterpreted anything that had been shared with us.
We learned a lot through these validation sessions. Participants helped us identify data points and perspectives we’d missed, and they suggested emphasizing particular perspectives more strongly. For example, after reviewing our draft findings, several participants believed that the perspective of children with Long COVID wasn’t coming out strongly enough. We lined up additional interviews with children with Long COVID and updated the materials accordingly to elevate their voice and experiences.
Circling back with participants was one concrete way we could employ the principle of working relationally. By sharing our draft findings with those who had participated in research, we were able to show that we listened, we believed them, and we were still looking to them as the experts. A person living with Long COVID who is very involved in Long COVID advocacy told us, “I have looked at so many documents about Long COVID. ... This is one of the first times that somebody understands the full scope of what has happened to a lot of people over the last two and a half years.” This is precisely the reaction we hoped our participants and other people with Long COVID would have.
By mapping their experiences seeking healthcare onto a composite journey map, participants helped us identify important steps we’d missed.
There’s still a lot of room for growth and evolution in this process as we seek to be more trauma-responsive, relational, and humble in our design research and process. For example, even though we worked closely with Long COVID advocates in the Long COVID cycle, we could go even further by bringing someone who has lived experience with Long COVID onto the team.
Additionally, we could be more systematic and timely in our ongoing communication with the participant community to ensure that we are always closing the loop. In the spirit of continuous improvement, our team learns, grows, and pushes ourselves to move beyond the status quo. We do this through the work we do, the relationships we build, and the knowledge we gain through our experiences.