ROLE:
Design+Research Lead
YEAR:
2018
the challenge.
Despite being one of the deadliest cancers for African American men, only 4% of prostate cancer trial participants are of that population.
Our client, who specialized in prostate cancer and disparities research, noticed the inequitable representation through her experience seeing patients. Her hypothesis was that an internet-based tool would increase patient-initiated conversations with physicians about clinical trial options, and improve overall enrollment rates.
process.
Meeting them where they are
While there is a plethora of papers on prostate cancer disparities, I found little on the personal experiences of the patients and the impacts the lack of access has on the community. Recruiting minorities has been a known struggle in the medical field, but there was no documentation around the why or how that is.
To fill this gap, I held a workshop with a UCSF-affiliated prostate cancer focus group, where I spoke with actual patients and gained a personal understanding of their treatment process. Stories ranged from both patient and caregiver feeling lost/alone in navigating their disease, to trusting in word-of-mouth more than their own provider.
Using these findings—which were captured via maps, diagrams, and audio recordings—I crafted personas detailing how each type accesses treatment info, their motivations (or not) to be active in their healthcare, and kinds of information that resonate with them. These were tested in-clinic by my MD, and how we generated the web-app architecture, content for the educational articles, and the logic behind the matching tool.
Painting an inclusive experience
When it came to look and feel, the group had a single, unified ask: "I want to see me." Part of the skepticism and lack of trust stemmed from the fact that any collateral they received was primarily geared toward non-Hispanic whites, and full of complex terms that they had never seen or understood. The only times they felt accommodated and seen were during these monthly focus group meetings.
the solution.
[ 1 ] Educational resources
The site provided vital info on what clinical trials are, their benefits, and how they differ from standard treatment. The content answered common questions patients have about trials, while breaking down stigma + concerns around mistreatment, discrimination, and safety.
[ 2 ] Matching tool
The matching tool was a quick, easy way for patients to find prostate cancer trials they may be eligible for. After answering a short series of questions about their condition, they were shown a custom list of available + relevant trials with details on what each trial involved, what was being tested, and what costs were covered.
If they were interested in enrolling, patients could either save or print (if taken in-clinic) the list to review with their providers, or call the research coordinator directly to book an appointment.
Results.
After our pilot was published, the client was given the Young Investigator Award by the Prostate Cancer Foundation and invited on several occasions to talk about the research.
Client earned $5 million in seed funding to start her own company for the cause. The company's mission is to “improve health equity by expanding access to cancer precision medicine.”