Rosenverse
When UX Research and Institutional Racism Collide: A Case Study

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
Cara Maritz
The Art of Extrapolation
2023 • Advancing Research 2023
Gold
Nick Cochran
Growing in Enterprise Design through Making Connections
2019 • Enterprise Experience 2019
Gold
Bria Alexander
Welcome
2024 • Enterprise Experience 2020
Gold
Bria Alexander
Opening Remarks
2021 • Design at Scale 2021
Gold
Samuel Proulx
From Standards to Innovation: Why Inclusive Design Wins
2025 • DesignOps Summit 2025
Gold
Dan Willis
Enterprise Storytelling Sessions
2017 • Enterprise Experience 2017
Gold
Dan Willis
Enterprise Storytelling Sessions
2016 • Enterprise UX 2016
Gold
Dave Hora
A Research Skills Evolution
2021 • Advancing Research 2021
Gold
Brendan Jarvis
It was the Best of Times. It was the Worst of Times.
2024 • DesignOps Summit 2024
Gold
Rachel Posman
"Ask Me Anything" with Rachel Posman and John Calhoun, Authors of the Upcoming Rosenfeld Book, The Design Conductors
2024 • DesignOps Summit 2024
Gold
Nancy Douyon
We'll Figure That Out in the Next Launch: Enterprise Tech's Nobility Complex
2018 • Enterprise Experience 2018
Gold
Benjamin Wiedmaier
Redefining Toolkits: Unbundling to Create a Perfect Match
2025 • Advancing Research 2025
Gold
Adam Cutler
People + Places + Practices = Outcomes
2016 • Enterprise UX 2016
Gold
Alla Weinberg
People Are Sick of Change: Psychological Safety is the Cure
2023 • DesignOps Community
Victor M. Gonzalez
Practicing Learners and Learning Practitioners
2021 • Advancing Research 2021
Gold
Alicia Mooty
Design Staffing Models
2021 • DesignOps Summit 2021
Gold

More Videos

Jon Fukuda

"You can’t escape existential matters; you need to confront them head on to unleash the power of storytelling."

Jon Fukuda

Storytelling for DesignOps

August 17, 2023

Chris Geison

"One of the core questions of research strategy is how do you decide what research to do when demand exceeds resources."

Chris Geison Cristen Torrey Eric Mahlstedt

What is Research Strategy?: A Panel of Research Leaders Discuss this Emergent Question

March 4, 2021

Himanshu Bharadwaj

"AI should be your friend, not your sycophant."

Himanshu Bharadwaj

If design had a heart

April 16, 2026

Stephen Anderson

"All these traditional ways managers tell employees what to do probably don’t apply in complex problem contexts."

Stephen Anderson

Puzzled? How to Coordinate Humans for Complex Challenges

May 27, 2021

John Paul de Guzman

"Being design-driven is a means to an end. We aim to be 1% better every day with data-driven obsession."

John Paul de Guzman

10k Screens Later: How We Became a Data-Driven Design Organization

September 24, 2024

Nalini Kotamraju

"Our shift is structural, not because of personalities — it was needed to influence earlier, more business-centric decisions."

Nalini Kotamraju

Research After UX

March 25, 2024

Jennifer Bolduc

"Every meeting now should be treated as if it’s fully remote to avoid creating uneven hybrid experiences."

Jennifer Bolduc Diane Gregorio Emily Day

What's involved with getting people back to work?: A panel discussion

July 1, 2021

Sarah Brooks

"Amara Spence will close with a keynote about designing for liberation and the rehearsal of freedom."

Sarah Brooks

Theme Three Intro

November 18, 2022

Sam Proulx

"Accessibility was just a clever trick that some charitable organization or someone who wanted to give back would do almost for fun."

Sam Proulx

To Boldly Go: The New Frontiers of Accessibility

March 11, 2022