Building Community Partnerships to Advance Progress Against Cancer

SU2C-funded research teams have studied ways of increasing cancer screening, clinical trial participation to close health disparities gaps

Since 1991, the number of people in the United States who die each year from cancer has dropped substantially—by nearly 35%. Although that’s great news, that progress has not reached everyone equally. For many people who live in medically underserved communities, barriers to screening, treatment, and clinical trial enrollment have too often kept lifesaving advances out of reach.

Black men, for instance, have the highest rates of cancer diagnoses and death from cancer. And people with the least amount of education, regardless of race or ethnicity, are much more likely to die from cancer than those with higher educational levels.

“You can have a miracle drug, but if it’s not accessible to people, you can’t help everyone who needs it,” said Robert Winn, MD, director of the Fox Chase Cancer Center in Philadelphia.

Stand Up To Cancer’s (SU2C) long-running Health Disparities Initiative was launched to help close that gap. Since 2020, this initiative has funded seven research teams, including several Dream Teams, with a focus on increasing colorectal and lung cancer screening in underserved communities and increasing participation among Black, Hispanic, and other underrepresented populations in clinical trials.

Team for team, their work is founded on the ideas of building trust with the communities they’re working in, establishing and continually strengthening local partnerships, and redesigning research systems so they meet the unique needs of different communities, explained Dr. Winn, a member and former chair of SU2C’s Health Equity Committee.

“The brilliance of the Stand Up To Cancer approach is that it brings together teams from different geographies to solve a really big problem,” Dr. Winn continued. “If we’re going to have a healthier nation and healthier communities, it comes with miracle medicines, but it also is the very hard and pragmatic work of getting those medicines to the communities that need them.”

Colorectal cancer screening: Not a one-size-fits-all

Colorectal cancer presents a powerful demonstration of the peril and challenges of health disparities in the United States.

Across the entire U.S. population, diagnoses of and death from colorectal cancer have slowly declined over the past three decades. Screening has played a large role in that success story. But the impact of this success hasn’t been evenly felt. Black and Native American people, for example, consistently have higher rates of colorectal cancer than White people and are substantially more likely to die from the disease.

In 2021, SU2C established the Colorectal Cancer Health Equity Dream Team. Their challenge: develop ways of improving colorectal cancer screening in minority and medically underserved communities.

Working with community health centers and local organizations in Boston, Los Angeles, and Great Plains tribal communities in South Dakota, the team conducted a clinical trial that involved mailing participants one of two kinds of stool-based colorectal cancer screening tests. Overall, trial participants were more likely to complete screening if they received a newer type of home test, called a FIT-DNA test (Cologuard), than a standard FIT test.

But the results weren’t that cut and dry. Changes in screening completion varied by where people lived and, for part of the study, the researchers had to pivot from their original plans. In South Dakota, one potential site was so remote that mailing colorectal cancer screening kits was not feasible, explained the trial’s lead researcher, Jennifer Haas, MD, MSc, of Mass General Hospital in Boston, forcing them to find an alternative approach.

The trial’s results, Dr. Haas continued, reflect the differences in the existing infrastructure in each of these communities. One of the most important lessons, she said, is that there isn’t a one-size-fits-all approach.

“What we learned through this is that none of the communities are the same,” she said. Different communities can have very different needs and belief systems, she continued, “and trying to meet everybody where they are is really important.”

The team also performed a study, led by Anton Bilchik, MD, PhD, of the St. John’s Cancer Institute in Los Angeles, that involved partnering with local leaders in that part of Southern California to build Community Health Action Teams, or CHATs. Composed of community residents, the CHATs worked with the team to create and refine the most effective messages and strategies for increasing colorectal cancer screening in the local Black and Latino/a communities.

“The CHATs were deeply involved in shaping every part of this study,” Dr. Bilchik said. “They helped us ensure that our strategies and messages were culturally grounded, linguistically inclusive, and in line with their communities’ needs.”

Navigating lung cancer screening

Black communities in the U.S. agricultural region often called the “tobacco belt” have among the highest rates of lung cancer and deaths from the disease in the country. Plagued by high poverty, this region of the Southeast also has stubbornly elevated smoking rates compared with many other parts of the country.

SU2C’s Southeastern Consortium for Lung Cancer Health Equity—which includes researchers from Hollings Cancer Center in South Carolina, UNC Lineberger Comprehensive Cancer Center in North Carolina, and Massey Comprehensive Cancer Center in Virginia—has been studying ways of tackling lung cancer disparities in this region.

A critical aspect of their research involved establishing strong partnerships with federally funded community clinics in underserved communities throughout the region. Much of their work has incorporated patient navigators to help people understand their cancer risk, connect with screening programs, and maneuver through the many obstacles that often keep quality health care out of reach in these communities.

For one study, the research team trained eight patient navigators from the areas served by a group of community clinics. The training allowed the navigators to help study participants deal with the clinical, logistical, and financial barriers to lung cancer screening. Navigators were trained on how to use social work-based strategies and techniques, helping them tailor their work to meet the needs of individual participants, Dr. Winn said.

Of the more than 750 people the navigators reached out to, 170 underwent screening. The vast majority of those screened were Black men and more than 80% were current heavy smokers. By comparison, less than 5% of participants in the large national study on which the current recommendations for U.S. lung cancer screening are based were Black, and only about 17% were still heavy smokers.

The team’s work, Dr. Winn said, shows that the expanded approach to patient navigation used in the study can be an effective bridge between underserved communities and cancer screening.

These local partnerships “have allowed us to reach some of the most at-risk people for the poorest cancer outcomes and get them screened,” he said. The support from Stand Up To Cancer has allowed the team to conduct “impact science,” he added. “This was really the catalyst.”

Reducing barriers to clinical trial enrollment

Clinical trials are another critical front line in addressing cancer disparities. Trials can offer access to potentially promising treatments, but for communities long underrepresented in research, they can also feel distant, unfamiliar, and difficult to navigate.

Take for example, a patient being treated at Temple University Hospital in downtown Philadelphia who wants to join a clinical trial being conducted at Fox Chase Cancer Center—located about 7 miles to the north and part of the same hospital system—but doesn’t own a car. That person may need to take three different buses to get their treatment program.

Linda Fleisher, PhD, MPH, a research professor at Fox Chase Cancer Center who co-leads the SU2C-supported Accelerating and Diversifying Access to Clinical Trials (ADACT) initiative, explained that transportation is just one of many logistical barriers that can make it difficult if not sometimes impossible for people in underserved communities to participate in clinical research. In ADACT, Dr. Fleisher said, providing share rides was just one way the program supported patients’ access to trials.

This sort of barrier is just one contributor to the lack of diversity in cancer clinical trials: Although people of color account for more than 40% of the U.S. population, they only represent about 20% of cancer clinical trial participants, Dr. Fleischer explained.

The SU2C-funded DISRUPT team is spearheading studies aimed at improving those numbers. In New York City, the DISRUPT team has enlisted people from communities served by five hospitals to help address barriers at multiple levels, explained Nina Bickell, MD, MPH, of the Icahn School of Medicine at Mount Sinai, the program’s lead researcher.

Community members helped shape outreach materials, including English- and Spanish-language videos about cancer research and clinical trials. The materials were shared across the Mount Sinai Health System and community gathering spots such as El Museo del Barrio, which features Caribbean and Latin American art. Community members also helped simplify language describing clinical trials to help patients and family members decide about joining trials.

“To make sure new cancer treatments work for all patients, we must recruit diverse patients to clinical trials,” Dr. Bickell said. ”DISRUPT created a way to find patients when their cancer treatments must change and clinical trials are more relevant and tell the patients and their physicians about these trials–-before a treatment decision is made.

Beyond recruitment, DISRUPT worked to bring community perspectives into the research process, creating a Community Scientist Certificate program to educate community members about clinical research. Three groups of community members graduated from the program. In addition, student health ambassadors were connected with community-members to learn about community based participatory research.

Focusing on early-phase clinical trials

A related SU2C effort focused on early-phase clinical trials, often among the hardest studies for underserved patients to access. Because phase 1 and phase 2 trials are smaller and largely focus on the safety of new treatments in humans (especially phase 1), they can involve intensive monitoring and frequent hospital visits, requirements many safety-net systems and community hospitals are not built to support.

To address that challenge, SU2C supported research teams in Dallas, Philadelphia, Los Angeles, and Chicago. Each team tested a different model for increasing diversity in early-phase trials.

In Dallas, for example, David Gerber, MD, worked with Parkland Health, a safety-net hospital system, to help patients access early-phase trials at UT Southwestern Medical Center. Parkland remained patients’ medical home, while UT Southwestern provided access to complex trials not available in the safety-net setting.

Trained navigators helped patients eligible for a clinical trial transfer their records, understand the logistics involved, and feel more comfortable participating in a research study. The pilot project enrolled 15 underrepresented minority patients, most to phase 1 trials.

“For us, it seemed like the optimal community engagement was to introduce the community to the concept of clinical trials more than specific clinical trials,” Dr. Gerber said. “So, when they do interact with the health care system, maybe it’s not the first time they’ve heard of [a clinical trial] and it seems less foreign to them.”

In Philadelphia, Martin Edelman, MD, and colleagues at Fox Chase Cancer Center and Temple University Hospital, used the SU2C funding to expand the clinical trial program at Temple and strengthened the support systems patients need to enroll. Support system improvements included help with transportation, creating Spanish-language materials, and training clinical trial “community ambassadors” at Temple. It also involved growing the downtown oncology program by adding clinicians, navigators, social workers, nutritionists, and research staff.

Trial accrual increased and was diverse, with nearly 60% of participants identifying as Black. The team also partnered with the Community College of Philadelphia and other area institutions to create a certificate program in clinical investigation, building a pathway for local students to enter the research workforce.

For Dr. Edelman, the goal was not simply to open more trials, but to make early drug development more accessible to communities that had long been left out. “My ultimate goal is to ensure that people from all backgrounds and communities have access to clinical trials of promising cancer therapies at all points in the research process,” he said.

Building a model for lasting change

Across these SU2C-funded projects, a new model is taking shape, one focused on building systems that communities can continue to use and shape long after a grant ends.

“No research project is the be-all and end-all,” Dr. Haas said. “It’s through continued engagement of communities that you can have the most impact.”

For Dr. Winn, that means pairing the development of new cancer treatments with the practical work of making sure those advances reach people. Translation of research done in laboratories and clinical trials, he said, “ultimately needs to lead to improved care for everyone.”