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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Black and Hispanic populations are severely underrepresented in Alzheimer's clinical trials despite higher rates of the disease among them.
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Usability research must expand beyond traditional metrics to articulate the inequality in user experiences related to systemic racism.
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Building digital trust is crucial in engaging marginalized communities, requiring transparency in leadership and organizational practices.
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Participants often feel suspicious when asked to disclose their race due to historical mistrust in the medical system.
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Visual representation of diverse leadership on organizational platforms significantly influences user trust; patterns of representation matter.
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Motivation to participate in clinical trials can include financial compensation, which should not be stigmatized in research design.
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Research participants bring unique historical contexts that can influence their engagement; understanding these contexts is essential to usability.
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Testimonials and culturally relevant statistics can play a vital role in reassuring participants about their inclusion and the intent behind the research.
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Successful collaboration requires advocating for broader conversations around systemic issues with stakeholders, even when it challenges the norm.
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Effective communication strategies help bridge gaps between usability metrics and addressing deeper societal issues.
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."
"I want to see pictures of your leadership and board. Do you have women? Do you have people of color?"
"I became engaged once the experts talked about what home portness was to them on a personal level."
"You know, I want to see pictures of your leadership and board. Do you have women, do you have people of color?"
"I interpreted payment as a sign of respect."
"Discounting the importance of incentives could lead to an exploitative relationship."
"Money is also a motivator for Mary; she cannot afford to go to the doctor when she has a medical problem."
"Organizational change often takes time, but understanding who holds power is crucial."
"Participants were enthusiastic about specific statistics that affected their own community."
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