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For healthcare providers, understanding the patient perspective on clinical trials is crucial to increasing participation rates, especially among underrepresented populations. Black patients, who are often underrepresented in clinical research, offer valuable insights that can help clinicians better address concerns and provide appropriate guidance.
The Search for Treatment Options
When standard treatments fail, patients often embark on determined quests for clinical trials. Karen Peterson, diagnosed with stage four triple negative breast cancer, describes her journey as “a long, arduous story. It had a lot to do with self-education, self-advocacy, and being able to make a decision under a really specialized environment.”
Patients frequently report having to navigate the clinical trial landscape with minimal guidance. Karen recalls going to extraordinary lengths: “I went through a lot of wild scenarios, sneaking into labs, talking my way past guards, approaching researchers… Sometimes I’d go to their lab, sometimes if they’re out doing professional work, I’d speak to them, go to the professor at the bar and have a drink with them.”
The Dismissal Experience
Healthcare providers should be aware that patients often feel dismissed when inquiring about clinical trials. Latoya Bolds-Johnson, diagnosed with stage three triple negative breast cancer at 36, shares: “I was dismissed a lot by my oncologist, whom I fired, who did not offer immunotherapy to me… I was sending emails to my oncologist at that time of different NCT studies of trials that I had found on my own, and he was just very dismissive about it.”
This dismissal is particularly concerning when it appears to have racial undertones. Tony Lozama, MD, Medical Director at Novartis, recounts an interaction with a physician who assumed an African American woman wouldn’t commit to a study because “they don’t have transportation. They’re probably gonna have to end up watching their grandkids.” When asked if they made the same assumptions about a white patient with the same profile, “the physician had to check themselves.”
Clinical Trials Offer Superior Care Experience
Patients consistently report receiving enhanced care in clinical trials. Ricki Fairley, breast cancer survivor and advocate. emphasizes: “You can’t get better care. There are more people prodding you and picking on you and scanning you. If you just went on chemo today for breast cancer, you probably wouldn’t have a scan for three months. But if you’re in a trial, you’re gonna get scanned every month.”
Bolds-Johnson describes it as receiving “the VIP treatment,” noting that trial participants typically receive “whatever is the latest and greatest medication that’s available for your disease” plus additional monitoring and attention.
Access to Expertise
A significant but often overlooked benefit is direct access to leading specialists. Peterson points out: “How many times are you gonna have a top-rated researcher who’s maybe one of best in the world? How many times are you gonna be able to have twenty, twenty-five minutes, an hour, an hour forty-five with this person?”
Beyond Personal Benefit
Many patients view trial participation through a broader lens than personal survival. Bolds-Johnson describes her participation as “building my own medical trust fund for my children… if we can get one step closer to formulating a cure or developing the latest treatment methods for triple negative breast cancer, then that may help my children along the way.”
Clinical Trial Phase Preferences
Providers should be aware that some patients specifically seek early-phase trials. Peterson explains her preference for phase one: “Phase one, you are guaranteed the drug. By the time you get to phase three, they’re offering you the standard of care versus the experimental drug. But in phase one, you’re guaranteed to get the drug.”
Recommendations for Providers
Healthcare providers can better support patients by:
- Proactively discussing clinical trials as treatment options rather than last resorts
- Examining potential biases in whom they offer clinical trials to
- Explaining the phases and processes in simple terms
- Connecting patients with advocacy groups and former trial participants
As Fairley emphasizes, “We need to understand this whole understanding of science well before somebody needs something.” By normalizing clinical trial conversations during routine care, providers can help ensure that when patients face serious diagnoses, they’re already familiar with clinical trials as a potential option.
Understanding the patient perspective helps providers recognize that for many participants, clinical trials represent hope, access to expertise, and the best available science—not experimentation or risk.