In recognition of Black History Month, key opinion leaders from the community oncology space and beyond speak to how organizations are working to diversify clinical cancer research and combat outcome disparities.
Disparities in care and outcomes for Black patients diagnosed with cancer have been an ongoing hurdle within the medical field, although efforts such as diversifying clinical trials to reflect real-world populations may provide a solution.
According to the American Cancer Society, Black patients have a high cancer burden, characterized by the highest mortality rate and shortest survival compared with other racial and ethnic groups across many disease types.1 Approximately 224,080 new cases of cancer are expected to be diagnosed in Black individuals in 2022, with 73,680 expected deaths. Black men are twice as likely to die of their disease vs Asian and Pacific Islanders, with mortality rates for prostate cancer being double that of every other racial and ethnic group.
Black women who have been diagnosed with breast cancer are 40% more likely to die of their disease compared with White women and are 2 times more likely to die if they are over the age of 50. Additionally, a third of Black women have reported experiencing racial discrimination when visiting a health care provider. Experts have also identified an association between living in predominantly Black areas and an increased risk of being diagnosed with advanced cancer, higher mortality rates, and lower survival rates for lung and breast cancer. These disparities also extend to clinical cancer research.
“These disparities have gone on for many years. Articles published more than 20 years ago,2 call attention to the effects of this problem on the lives of the Black population. With specific attention to lung cancer, the participation of Black patients in clinical research still sits at somewhere between 6% and 8%, [and] it really hasn’t improved that much at all over time. I think the medical community is waking up and realizing that we are behind in our collective efforts to address this. It is not enough to just talk about it; we actually must do something that realistically provides us some answers. It would be enlightening if we get to measure our progress in a few short years but I suspect this will be an endless journey,” Ozuru O. Ukoha, MD, an assistant professor in the Department of Cardiovascular and Thoracic Surgery at Rush Medical College and chairman of the Division of Cardiothoracic Surgery at John H. Stroger Jr. Hospital of Cook County in Chicago, Illinois, said in an interview with CancerNetwork®.
During Black History Month, CancerNetwork® spoke with several key opinion leaders on these hurdles to equitable care and how institutions are rising to meet the challenge through policy and initiatives.
Lung cancer research has accelerated within the last few years, contributing to a notable decline in cancer-related deaths. As clinical lung cancer research is conducted with the goal of extending survival and even curing patients, it is increasingly important to enroll diverse patient populations so the field can further its understanding of how different treatments impact racial and ethnic subgroups, Ukoha said. This idea especially applies to Black patients, since they have the highest lung cancer mortality rate and are notably underrepresented in clinical research despite potentially having the most to benefit from participating compared to other groups.
In fact, one study that assessed clinical cancer enrollment rates by race reported that Black patients represented 3.1% of study populations compared with 76.3% White patients, 18.3% Asian patients, and 6.1% Hispanic patients.3 The benchmark National Lung Screening Trial which enrolled 53,454 participants across 33 health centers had 91% Whites and only 4% Blacks.4 In response to these disparities, the American Lung Association recently launched the Awareness, Trust and Action campaign, the goal of which is to educate Black individuals about clinical cancer research and to encourage patients to ask their providers about enrollment.5 The goals of the campaign include empowering patients to seek information from their healthcare team about their treatment options and make informed decisions.
The first phase of the campaign, Awareness, focuses on using educational materials, such as social media and videos to educate the people on disparities and the associated deleterious outcomes. From there, patients are empowered to ask their physicians about enrolling in clinical trials and the physicians can address eligibility criteria.
“It might take quite a bit of time to get the message out but the way that it is being employed right now allows people to at least get the information they did not have access to before. We do need to address this problem because it is staring us in the face,” Ukoha stated.
The second phase, Trust, is a huge hurdle for the Black population because of past victimization in medical experiments, he explained. Progress in enrollment in clinical trials will require some effort by the medical community to restore this trust. Ukoha explained that some of the necessary steps in rebuilding the confidence of the Black population in clinical research include compassion, transparency, equal treatment, and some racial concordance between patients and providers. The final stage, Action, happens when the patients begin to enroll in clinical trials after the first 2 stages have laid the necessary foundation. Any medical community can adopt these 3 stages, or something similar, in their approach to the same problem. Hopefully, the field will be able to objectively track progress such that in a few years, experts can look back and see that some appreciable progress is actually being made in this fight against racial disparity in health care, he said.
At the start of 2022, the Association of Community Cancer Centers (ACCC) released a set of consensus-driven recommendations to better allow for diversity, equity, and accessibility in clinical cancer research. To accomplish this, the ACCC partnered with key stakeholders to further develop tools that can be used in oncology programs to involve patient and community perspectives. Such resources include tools for patients and community engagement, quality needs assessments, and best practice case studies for community-based cancer trials.5
These items among others were released during the ACCC Community Oncology Research Institute (ACORI) Call to Action Summit, which united 120 stakeholders that represented oncology programs and practices, research teams, patient advocates, trial sponsors, industry representatives, and regulatory organizations.
In an interview with CancerNetwork®, Randall A. Oyer, MD,medical director of Penn Medicine Ann B. Barshinger Cancer Institute and the Cancer Risk Evaluation Program at Lancaster General Health in Pennsylvania, discussed how ACORI came to be.
“There are still inexcusable differences in outcomes for Black and White patients in cancer, especially in breast cancer, colorectal cancer, and multiple myeloma,” Oyer said. “The only way that these inequities will be corrected is through access to clinical trials. There’s also, of course, the need for access to health insurance and public health. But ACCC, in response to concerns and questions from our members, put together a survey [and] we asked what peoples’ top concerns about providing clinical trials in the community were. We addressed those and came up with ACORI, [with the] goal to close the gap in community research.”
Specifically, the goal of ACORI is to close the disparities gap between universities and academic medical centers that host clinical research, and the community practices in which patients receive care. Notable disparities between universities and community practices include access to clinical research, knowledge of clinical trials, and the ability to travel to where clinical trials are being held.
In the short term, however, Oyer describes several goals that ACORI hopes to accomplish.
“Through ACORI, we are first and foremost advocating for diversity for clinical trial participants, so that we can make sure that all Americans have equal access to the benefits of clinical research and developing education programs and resources in conjunction with sponsors that recognize the need to broaden eligibility criteria. Our second goal is capacity building. We’re working with our membership, to help them assess what’s needed in their own programs to be able to provide clinical trials to their patients,” he explained. “Our third goal is research diffusion. ACCC has many partners—many members across the U.S—[and] we work in partnership with community organizations, with academic programs, and we want to be a conduit to bring clinical trials from sponsors into our community sites across the United States.”
Several additional items from the report came out of the ACORI Call to Action Summit that were specific oncology programs:
Moreover, recommendations urged industry sponsors to consider identifying and partnering with programs catered to populations that are underserved and less likely to be included in research.
The ACCC also partnered with the American Society for Clinical Oncology roughly 2 years ago with the goal of increasing clinical trial participation among Black and Hispanic patients with cancer. To accomplish this, Oyer stated, a community needs assessment has been developed.
He stated, “We have piloted in over 50 sites across the United States a self-assessment tool [that allows] people [to] look at their own readiness for clinical trials and assess their own programs so that they can look for opportunities for improvement. We’ve also recognized the importance of implicit bias in terms of who gets offered a clinical trial and who doesn’t...We built on an existing training module from one of our members and we’ve piloted that at sites across the country as part of this project. We’ve learned that it is both effective and feasible to do implicit bias training as part of clinical trial program development.”
As Black History Month ends, both key opinion leaders shared their closing thoughts on the direction the oncology space needs to head in to move the needle forward for undeserved patient populations:
“My advice to community programs and to community oncologists would be [to join] ACCC and take advantage of our programs, start or expand your own research programs, diversify your staff, roll up your sleeves, and just get going. Start somewhere,” Oyer concluded
“I’d like [the oncology community] to know that we have a problem in our hands and we cannot ignore it. When you don’t include people of color, specifically Black Americans in your research and you publish your results, you are essentially not providing information that could be helpful to the population across the country. You are denying very useful information to a group where that was needed…Try as much as possible to diversify [clinical trial] groups. Try to have some of these ethnic concordances, whether it be with your coordinator or your nursing staff, your doctor’s, or your recruitment staff. Try to have some concordance so that people can at least talk to [others] that they can relate to. Look to educate the patients in a way that they will understand. Be compassionate,” Ukoha concluded.