Article:
4 Lessons for Effective UX Research with Marginalized Communities
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Designing for marginalized communities requires more than good intentions; it demands thoughtful engagement and inclusive solutions. Discover how to create supportive environments, hear marginalized voices, and address systemic barriers.
Fred Hutch Cancer Center Project Overview
In our collaboration with Fred Hutch Cancer Center, we identified four lessons to guide inclusive recruitment, research, and design. Our UX research with marginalized communities shaped the design of a new oncology hospital and enhanced existing services. By centering the voices of those often excluded, we gained critical insights into their challenges.
Lesson 1: Define Your Target Population
To include marginalized communities in research, first, define what "marginalized" means for your project. Its meaning can vary, leading to misunderstandings when used interchangeably with "underserved" or "vulnerable." Revisit your research goals to see which communities need attention.
Together with Fred Hutch’s team, we identified often-overlooked groups in cancer care research through questions like:
- Which communities struggle to access high-quality care? For example, do specific racial or socioeconomic groups face systemic barriers?
- Whose perspectives are missing from your patient experience data? Consider if certain communities are missing from your feedback mechanisms.
- Why is it essential to include these communities in your research at this time? Reflect on current healthcare disparities and the urgency of addressing them.
Based on these discussions, Fred Hutch prioritized engaging Black, Latino, Native American, LGBTQ+, and low-income communities—demographics often overlooked by research yet vital for fostering equitable cancer care.
Strategies for Success
- Revisit and clarify your research goals to define your target population.
- Identify which groups face barriers to access and representation in your field.
- Clarify why it’s important to engage these communities now.
Lesson 2: Create Supportive Participant Experiences
Designing a supportive research environment will help you gather better insights from marginalized communities. When choosing research methods, consider your participants’ experience, not just whether you’ll answer your research questions.
When participants feel comfortable and respected, they’re more likely to be honest, engage deeply, and share meaningful perspectives. This improves the quality and depth of your research.
For Fred Hutch, we designed the research to help participants feel safe sharing very personal experiences. We chose in-person workshops over virtual meetings, enabling rich, non-verbal communication—crucial when discussing sensitive topics. Activities like individual reflection, writing, and small-group discussions helped participants engage comfortably.
To accommodate different needs, we provided interpreters and let family members join when needed. Remote interviews included those who couldn’t attend in person, ensuring all voices were heard.
Strategies for Success
- Interact in person to build trust and empathy.
- Provide multiple ways for participants to contribute and engage.
- Adapt research formats to meet diverse participant needs.
Lesson 3: Let Participants Tell Their Stories
Rather than viewing participants from marginalized communities through the lens of their demographic categories, focus on their experiences and perspectives.
With Fred Hutch, we avoided labeling or assuming anything about participants’ backgrounds. Instead, we asked them to share the parts of their identities that were meaningful to them. This gave them space to naturally mention how being a Black woman or a transgender Latino man affected their cancer care.
When analyzing our workshop and interview data, we reflected on our biases as researchers, ensuring we didn't force participants’ stories into predefined categories. Instead, we let their diverse experiences lead our findings.
Strategies for Success
- Avoid making assumptions about participants based on identity.
- Encourage participants to share personal stories on their own terms.
- Reflect on and address your own biases as a researcher.
Lesson 4: Encourage Co-Creation, Not Problem-Solving
When working with marginalized communities, it can be tempting to start solving problems. However, the people most affected by a challenge often need space to reflect before discussing solutions. Focusing on co-creation lets participants share their insights and shape solutions without burdening them with problem-solving.
Journey mapping helps participants reveal key challenges and decisions throughout their cancer care experience.
During the Fred Hutch project, we used journey maps and storyboards to give participants time to reflect on their cancer care experiences. We asked questions like, "What did you need most in this situation?" This kept discussions focused on their experiences instead of solving complex issues.
During interviews, we presented solutions from the Fred Hutch team and asked for feedback. This ensured that participants’ insights guided the process, but we and the Fred Hutch team were responsible for implementing solutions.
Strategies for Success
- Give participants space to reflect before problem-solving.
- Use thoughtful prompts to guide discussions about personal experiences.
- Present and seek feedback on existing solutions rather than asking for new ideas immediately.
Conclusion
Moving to inclusive design is a commitment to uplifting marginalized communities. Our project with Fred Hutch shows that effective UX research and inclusive designs go beyond data collection, they require us to change how we engage, listen, and co-create with those historically ignored. Use our Strategies for Success to meaningfully engage with marginalized communities and improve experiences with your products and services.