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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Traditional usability metrics like time on task are insufficient to address systemic racism in clinical trial recruitment.
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Black and Hispanic Latino communities have historical trauma and deep mistrust toward medical institutions that impact digital interactions.
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Building digital trust requires creating a reciprocal relationship, not just collecting data from users.
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Visible diverse leadership on ‘About Us’ pages significantly affects users’ trust and willingness to participate.
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A lack of diverse organizational representation is a major usability barrier beyond UI issues.
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Including culturally specific community statistics and rich testimonials increases engagement and perceived relevance.
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Participants have multiple, valid motivations for joining trials, including financial incentives, and these shouldn't be dismissed.
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Being upfront about paid participation signals respect and builds trust among marginalized groups.
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User researchers must be willing to expand their scope beyond simplistic mandates and advocate for systemic equity.
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Boldness and sharing authentic participant stories empower researchers to confront client biases and people-pleasing tendencies.
Notable Quotes
"My race has been treated like guinea pigs for most of our existence."
"Black people in general are sometimes looked at as being 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 a sign of respect and values my time and participation."
"There is no perfect user if we discount lived experiences that don’t fit arbitrary profiles."
"Expecting participants to act solely out of altruism places an additional burden and perpetuates exploitation."
"Sometimes you just have to be a little bit bold and willing to use your power and privilege to advocate for what you know to be true."
"Comfort is temporary. You have to be willing to be uncomfortable to do this work."
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