Cancer deaths have dropped by 33% over the last three decades, in large part due to advancements in prevention, diagnostic tools, and treatments. Clinical trials help drive these innovations, but new research suggests participation levels aren’t where they should be.
Despite their importance, only about 2-5% of adult cancer patients join clinical trials, with Black and Native Americans often being underrepresented.
Now, a new study published in Patient Education and Counseling found that only 15% of cancer survivors discussed trials with their healthcare providers. Hispanic-American and Asian-American patients were less likely to say they were knowledgeable about the process.
Here’s what to know about clinical trials for cancer patients, why Americans of color are often left behind, and why bringing up trial participation with your doctor matters.
Clinical trials are well-controlled, regimented studies that test new ways to treat, prevent, screen for, or care for a certain disease. Each trial usually has a narrow purview, such as testing a treatment for a specific subtype of stage 3 breast cancer, for example.
“All clinical trials go through multiple different committees and review by peers and institutional review boards to ensure that they are safe and that they are appropriate,” Judy Boughey, MD, a surgical oncologist, and chair of breast and melanoma surgical oncology at the Mayo Clinic Comprehensive Cancer Center, told Health.
There are a few different stages of clinical trials for cancer:
- Phase 1 determines the highest dose for a new treatment that doesn’t lead to substantial side effects.
- Phase 2 tests whether a treatment may work against a particular cancer type.
- Phase 3 tests whether the treatment works better than existing ones or standard care. Typically, researchers randomly assign participants to receive either a new treatment or the standard care option, and neither the participants nor the doctors know who’s getting which treatment.
- Phase 4 tracks the potential benefits and side effects of a new treatment long-term after its approval.
These trials provide participants with “an opportunity to get something totally new that nobody else has ever had that might actually be useful,” said Otis Brawley, MD, professor of oncology and associate director of Community Outreach and Engagement at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center.
Even participants who end up in the control group and don’t receive the new drug or intervention still benefit from higher levels of care.
Often, many people who get treated for cancer don’t receive that treatment as it was intended, Brawley told Health. Oncologists might offer a lower dose, and patients might not get the treatment on schedule as required.
The regimented nature of trials, said Brawley, means that patients receive the treatment correctly, as it is “audited by doctors and protocol nurses.”
Thanks to successful clinical trials, over 120 new cancer drugs received approval from the Food and Drug Administration between 2003 and 2021.
Given the importance of cancer clinical trials, the authors of this new Patient Education and Counseling study wanted to investigate what people knew about them.
They examined data from 1,201 adult cancer survivors who took part in a 2021 National Institutes of Health survey, and found that 78% reported having at least “a little” knowledge about clinical trials.
However, only 178 participants, or 15%, had discussed trials with their healthcare providers.
Those who discussed clinical trials with their doctor were almost nine times more likely to say they felt knowledgeable about clinical trials.
Who’s Being Left Out—And Why It Matters
The researchers broke down the survey results further and found that other factors influenced participants’ clinical trial knowledge and discussions:
- People with advanced cancers were over 3.6 times as likely to report discussing trials with their providers, as compared to people with early-stage cancers.
- Those reporting more education, higher quality of care, and greater financial security were more likely to have higher levels of knowledge about trials.
- Hispanic and Asian cancer survivors, as well as survivors without a college education, were less likely to be knowledgeable about clinical trials.
This is not the first time researchers have seen results like these—there’s a long history of people of color being underrepresented in clinical trials.
There are likely many reasons why, from distrust in the medical system to a lack of access to well-funded hospitals that support trials.
At these institutions where resources are stretched thin, doctors may not even think to bring up trials with their cancer patients.
“[In] a county hospital or hospital that is financially challenged, the doctors have to see a certain number of patients per day,” said Brawley. “You don’t have the time that it takes to start clinical trials, and to have them available to patients there.”
Some centers, he said, might only run one or two trials, and if the patient doesn’t have a specific type of cancer and isn’t eligible, the trials are less likely to be mentioned.
Language barriers are another reason why patients of color may not receive information about clinical trials from their doctors, added Boughey.
“I hope in the future, with translation services and AI, that we will have a lot more opportunity for equal access across all populations,” she said.
That diverse representation is key—not only does it ensure people of all racial, educational, and socioeconomic backgrounds can try cutting-edge treatments, but it also allows doctors to be certain that these tools work well for everyone.
If you’re interested in hearing more about clinical trials, experts recommend speaking with your doctor about what might be available at their cancer center or one nearby.
Patients can also do their own research, and check out the ClinicalTrials.gov directory to search.
Doctors do have limited time, but it’s imperative that they educate their patients about clinical trials and support them if they’re interested, especially those patients who aren’t as likely to be informed.
“Sometimes that may involve sending the patient to a different center that has that trial open for that patient,” said Boughey.
But if your doctor doesn’t broach the subject, you should feel comfortable doing so.
“Patients should be empowered and be advocating for themselves,” Boughey added.
