Rosenverse

This video is only accessible to Gold members. Log in or register for a free Gold Trial Account to watch.

Log in Register

Most conference talks are accessible to Gold members, while community videos are generally available to all logged-in members.

When UX Research and Institutional Racism Collide: A Case Study
Gold
Friday, March 12, 2021 • Advancing Research 2021
Share the love for this talk
When UX Research and Institutional Racism Collide: A Case Study
Speakers: Emily Williams and Nora Fiore
Link:

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

  • Usability in marginalized communities must consider historical trauma and distrust beyond standard metrics like time or error rate.

  • Clinical trial registries underrepresent Black and Hispanic Latino participants despite higher Alzheimer’s incidence.

  • Questions about race on forms can spark skepticism and suspicion due to historical abuses and systemic racism.

  • Showing diverse leadership on organizational about pages significantly boosts trust for participants.

  • Users evaluate organizations through leadership representation and background checks, not just website content.

  • Financial incentives for clinical trials are a valid motivator and sign of respect, especially for marginalized populations.

  • Designing for equity requires expanding the researcher’s role beyond checking usability boxes to confronting systemic issues.

  • Participant storytelling helps counter biased assumptions about motivations like altruism versus payment.

  • Building digital relationships with communities harmed by systemic racism requires transparency and reciprocity.

  • 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."

Ask the Rosenbot
Brendan Jarvis
It was the Best of Times. It was the Worst of Times.
2024 • DesignOps Summit 2024
Gold
Iram Shah
Closing Keynote: The View from the Top
2019 • Enterprise Experience 2019
Gold
Jemma Ahmed
Theme Panel
2025 • Advancing Research 2025
Gold
Bob Baxley
Theme 4: Discussion
2024 • Enterprise Experience 2020
Gold
Nicole Aleong
What UX research can learn from other research practices [Advancing Research Community Workshop Series]
2023 • Advancing Research Community
Alla Weinberg
Design Teams Need Psychological Safety: Here’s How to Create It
2022 • DesignOps Summit 2022
Gold
Jennifer Kong
Journeying toward AI-assisted documentation in healthcare
2024 • Designing with AI 2024
Gold
Louis Rosenfeld
How AI will Change DesignOps Tooling
2023 • DesignOps Summit 2023
Gold
Jackie Velasquez-Ross
Talent Acquisition and Our Responsibility
2020 • DesignOps Community
Shawna Hein
Create a Cohesive Civic Design Practice Across Agency, Vendors, and Contracts
2022 • Civic Design 2022
Gold
JJ Kercher
A Roadmap for Maturing Design in the Enterprise
2018 • Enterprise Experience 2018
Gold
Michele Marut
Research Repositories Reconsidered
2019 • DesignOps Community
Uday Gajendar
Theme Four Intro
2023 • Enterprise UX 2023
Gold
Bria Alexander
Opening Remarks
2021 • DesignOps Summit 2021
Gold
Nathan Curtis
Design Systems for Us: How Many One-Source(s)-of-Truth Are Enough?
2019 • DesignOps Community
Peter Van Dijck
Hands-on AI #1: Let’s write your first AI eval
2025 • Rosenfeld Community

More Videos

Doug Powell

"We are truly in a golden age for our profession."

Doug Powell

Closing Keynote: Design at Scale

November 8, 2018

Mila Kuznetsova

"Power dynamics exist in every session. People don’t want to be embarrassed or feel put on the spot."

Mila Kuznetsova Lucy Denton

How Lessons Learned from Our Youngest Users Can Help Us Evolve our Practices

March 9, 2022

Sarah Gallimore

"Evan actually spent less than 15 minutes on the essay, and instead of working on homework, he was writing a letter to his significant other back home in Detroit."

Sarah Gallimore

Inspire Progress with Artifacts from the Future

November 18, 2022

Lada Gorlenko

"Field usability testing showed stakeholders immediately how much value UX can add by catching issues before deployment."

Lada Gorlenko Sharbani Dhar Sébastien Malo Rob Mitzel Ivana Ng Michal Anne Rogondino

Theme 1: Discussion

January 8, 2024

Alnie Figueroa

"AI is just a better version of the tools you’re already using to refine ideas and express thoughts."

Alnie Figueroa

The Future of Design Operations: Transforming Our Craft

September 10, 2025

Landon Barnes

"You shouldn’t send another survey unless you’ve implemented changes and allowed time for behavior to adapt."

Landon Barnes

Are My Research Findings Actually Meaningful?

March 10, 2022

Emily Eagle

"Every workaround is a mini story of somebody overcoming an obstacle."

Emily Eagle

Can't Rewind: Radio and Retail

June 3, 2019

Malini Rao

"No two re-platforming journeys are exactly the same, and there isn't one single formula that works every time."

Malini Rao

Lessons Learned from a 4-year Product Re-platforming Journey

June 9, 2021

Asia Hoe

"Accessibility isn’t just a checklist; it changes moment to moment for any individual."

Asia Hoe

Partnering with Product: A Journey from Junior to Senior Design

November 29, 2023