Summary
Our recent UX engagement on a federal grant focused on a challenge in Alzheimer’s research: Black, Hispanic, and/or Latinx people are diagnosed with Alzheimer’s disease more frequently than their white counterparts, yet participate in clinical trials, particularly prevention trials, at a lower rate. We were tasked with solving “usability issues” that prevented underrepresented populations from participating in research. Predictably, we surfaced more about inequality than usability. In this talk, we will share some of the mistakes we made and lessons we learned about broadening the definition of usability. Additionally, we will discuss how we articulated systemic inequality as part of our usability findings, and how this experience continues to influence our thinking about usability, inclusivity and anti-racism in our present research endeavours.
Key Insights
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Usability in marginalized communities must consider historical trauma and distrust beyond standard metrics like time or error rate.
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Clinical trial registries underrepresent Black and Hispanic Latino participants despite higher Alzheimer’s incidence.
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Questions about race on forms can spark skepticism and suspicion due to historical abuses and systemic racism.
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Showing diverse leadership on organizational about pages significantly boosts trust for participants.
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Users evaluate organizations through leadership representation and background checks, not just website content.
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Financial incentives for clinical trials are a valid motivator and sign of respect, especially for marginalized populations.
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Designing for equity requires expanding the researcher’s role beyond checking usability boxes to confronting systemic issues.
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Participant storytelling helps counter biased assumptions about motivations like altruism versus payment.
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Building digital relationships with communities harmed by systemic racism requires transparency and reciprocity.
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Researchers must be willing to take risks and be bold to advocate for equity despite client or stakeholder discomfort.
Notable Quotes
"My race has been treated like guinea pigs for most of our existence."
"Black people in general are sometimes looked at as disposable."
"Showing is better than telling, especially when it comes to equity."
"A website has no meaningful identity outside of the people it represents."
"I want to see pictures of your leadership and board. Do you have women, do you have people of color?"
"Payment is an important part of the research relationship for many users."
"There is no perfect user, and motivations can coexist within a single person."
"Mentioning incentives can build trust by signaling reciprocity."
"It's wrong to expect people to want to do more work with less motivation."
"Sometimes you just have to be a little bit bold and be willing to use your power and privilege to advocate for what you know to be true."
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