Health-care professionals have been wrestling with various inequities in their field, with varying results.
One success story is a five-year effort by the Abramson Cancer Center at the University of Pennsylvania to enroll more Black patients with cancer in clinical trials. The trials give more Black patients access to the latest cancer treatments — and promise wider benefits, too.
In 2014, Black residents comprised 19% of the 12-county area around and including Philadelphia. And 16.5% of cancer patients were Black. Yet at Abramson, only 12.2% of patients in cancer treatment trials were Black. After the five-year effort, the number of Black patients enrolled in the trials nearly doubled – to 20.9%.
The findings were published in an abstract presented at the American Society of Clinical Oncology’s annual meeting in June. The authors included Carmen Guerra, a physician, professor and the cancer center’s associate director for diversity and outreach, plus Armenta Washington, a senior research coordinator.
We spoke to them recently about their work.
Why is there a lack of diversity in clinical trials for cancer treatment?
Guerra: Basically, the research has shown that if Black patients were asked to participate, they would agree to participate at the same rate as everyone else. That led people to look into questions about implicit bias. In research published in 2020, one of the themes was that minority patients were viewed as more challenging by physicians, their leaders, and the research staff. There’s a lot to unpack here, but although the study doesn’t say this, it’s a normal response that if you see something as challenging, you’re likely to avoid it.
Another theme is that minority patients were not perceived as ideal candidates. Again, a lot to unpack. But one of the concerns was their patients’ challenges — transportation (they might not show up) or they are less likely to have support (everyone in the family is working).
The other thing that came up in this study was that minority patients felt trust was missing. There is good evidence for why Black patients don’t trust the medical system. Tuskegee. Henrietta Lacks. There’s the whole legacy of the Holmesburg Prison experiment, where experiments were performed on the inmates for the benefit of dermatology.
There’s yet another factor: referral patterns. Black and Latino communities tend to seek care locally. Sometimes, that means the patient might go to a local hospital that might not have the expertise of a comprehensive cancer center. So patients might not learn about all the options, including clinical trials.
Why is it important to include Black patients in clinical trials?
Guerra: One reason is access — the newest cures are only available in these clinical trials. We are studying whether they work. So if you want to have access to a cure that is perhaps better than what we have now, it’s through a trial.
Secondly, when we conduct research, we want to say that what we learn applies to all people. But that might not be the case if we are just studying one population — primarily white individuals. When we conclude that a treatment works, or doesn’t work, or has certain side effects, those findings might be limited because they weren’t studied in other populations.
What did the Cancer Center do to change things?
Guerra: One of the things we did was to begin to conduct outreach to our different, diverse communities by building relationships with faith-based organizations. The churches that serve Black communities. We conducted educational programs. After their services, we would talk to them about cancer, screenings and clinical trials. For many, that was the first time they were hearing something positive about clinical trials.
In our marketing strategy, we included stories of Black patients who had been treated for cancer and cured of it. People in the community began to see in ads people who looked like them.
We developed a partnership with a company called Ride Health, which provides rides for patients by forming a relationship with rideshare companies. It prevents patients from having to go through medical transportation companies, which pick up multiple patients. Your ride can become hours long.
Finally, we worked with our own researchers and staff to help them understand how to reach the population, how to screen for them, how to meet their needs better.
Getting back to the issue of trust, one of the things we’ve also done — although I can’t measure the impact — is to help our doctors, nurses and staff better understand that rather than saying the patients are distrustful, which sounds like blaming the victim, to change the framework to think about the trustworthiness of research institutions. That’s a mind shift. We came up with wonderful ideas.
Ultimately, everyone saw that we didn’t just want Black patients to be in trials. We were really working within the community to help reduce their burden of cancer.
A drive-by clinic at Enon Tabernacle Baptist Church has been described as a significant step toward connecting with the community and establishing a trust that might lead to more participation in clinical trials. How did it work?
Washington: Enon is the largest Baptist church in Philadelphia, and they have engaged with well over 14,000 people during the pandemic. They were one of the first sites providing COVID testing to the Black community, in partnership with the Black Doctors Consortium. They had a feeding program. They were addressing social isolation.
In August, when Black Panther actor Chadwick Boseman died of colon cancer, Enon reached out to Abramson Cancer Center and Einstein Healthcare Network to ask what we were going to do about the disparity in the Black community. Statistically, Black people die 33% more often than white people from colorectal cancer.
We took a best practice of the American Cancer Society, which is a program called Flu-FIT, the National Cancer Institute’s (NCI) Screen 2 Save, and combined with Enon’s drive-by approach. Participants registered online and those eligible came to the parking lot of the church to receive a take-home test to screen for colon cancer. [FIT stands for fecal immunochemical test.]
We rolled this project out during the pandemic, when, on top of the disparity that already existed, there was a 90% reduction in people coming in for screening.
We had 251 individuals who participated, who took home tests. And 80.5% returned them. That’s huge. Most had negative results. But 6% — 15 people — had a positive result. They were all referred for a diagnostic colonoscopy.
We knew, going into this, that because of the pandemic, we were going to encounter people who were uninsured. And we did. One of the successes involves a woman with a positive result who had just lost her job and had no health insurance. But instead of leaving her on her own, we were able to help get her an early appointment for a follow-up. She ended up getting a diagnostic colonoscopy. They found three polyps, which were removed. They were all precancerous. Colon cancer is one of the most treatable cancers if it is detected early enough through screening.
You seem really passionate about this.
Washington: I had a cousin who died from colon cancer before age 50. The new recommendation is that you get screened at age 45. Had that been the recommendation at the time, it may have saved her life. As it was, she was misdiagnosed as having bronchitis. By the time she was diagnosed with colon cancer, it had metastasized to her lungs.
Going forward, this project demonstrates the possibility for communities when health-care providers and trusted community partners come together in service to people during a global pandemic. The intention is to seek additional funding that would allow us to expand this drive-by Flu-FIT pilot project into West and Southwest Philadelphia, where we see the greatest need for this type of screening.