In 2003, Siteman Cancer Center established its first community advisory board, making its effort to educate and engage with its community a top priority. When the National Cancer Institute (NCI) included community engagement metrics as a requirement for designation as a comprehensive cancer center (CCC), Siteman was prepared. Today, Siteman is the only NCI-designated CCC in Missouri, and it has created a robust community outreach program to address local disparities in care.
Siteman Cancer Center serves an 82-county wide area that spans southern Missouri and southern Illinois. Its patient population is diverse, and it provides care in both urban and rural settings. Siteman’s patients experience multiple barriers to care, including lack of transportation, high mortality rates among Black women with breast cancer, and a lack of educational resources on the importance of regular cancer screening. To decrease these barriers, Siteman implemented a robust community outreach and engagement program it called the Program for the Elimination of Cancer Disparities (PECaD).
Bettina Drake, PhD, MPH, is the associate director for community outreach and engagement at Siteman Cancer Center and a professor of surgery for the Division of Public Health Sciences at Washington University School of Medicine. “Our mortality rates among African American women with breast cancer are significantly high in this region,” says Dr. Drake. To lower those rates and the rates of all cancers, PECaD is working on four fronts to decrease disparities in cancer care: 1) monitoring data, 2) engaging the community, 3) supporting research, and 4) ensuring diverse representation in research.
Siteman Cancer Center collects and uses data to identify the burdens and needs of its community, allowing it to better target its education and clinical service initiatives. PECaD team members work closely with Siteman’s tumor registry to collect data on its patients and their cancer diagnoses. PECaD also pulls data from its service areas to better understand cancer risk, incidence, and mortality within each county Siteman serves. These data are ultimately used to identify PECaD’s areas of focus. For example, research has indicated that the top four cancers treated at Siteman are breast, prostate, lung, and colon, so much of PECaD's community outreach efforts focus on the prevention, screening, and care of those cancers.
Engaging the Community
To strengthen its relationships with its community, Siteman reaches out through town halls, community events, and a mobile mammography van. In the wake of COVID-19, the PECaD team now conducts its regular town halls virtually. During these meetings, a panel of stakeholders addresses community needs and answers questions from community members.
“Our panels are made up of clinicians, survivors, community groups, advocacy groups, churches, and more,” explains Dr. Drake. Currently, PECaD’s two leading community efforts are to decrease breast cancer disparities among Black women and decrease colorectal cancer incidence by improving prevention and screening education for its rural population. PECaD has a mammography van that travels around the community to increase screening rates.
“Our mortality rates among African American women with breast cancer are significantly high,” says Dr. Drake. “One of the things that we have found to be successful is working with our breast cancer community partnerships, clinicians, and the Siteman mammography van to target specific areas where African American women are diagnosed with late-stage disease.” Through this effort, Dr. Drake’s team has reduced by 40 percent the number of Black women diagnosed at Siteman with late-stage breast cancer. To support women already diagnosed, the team supports patients throughout their treatment to ensure women complete their therapies.
Dr. Drake says that some of Siteman Cancer Center’s patient population lives within a colorectal cancer hot spot, which stretches along the Mississippi River. “We are working with other hospitals in those areas to understand what barriers exist to screening at both the system level and individual level,” says Dr. Drake. “The next step will be to identify collaborative strategies to try to target barriers in those areas. That’s another significant disparity we see, which is mostly rural-based.”
Once the PECaD program identifies a need within the community (e.g., mammography services), Siteman addresses that need with education and community outreach. But the program’s work doesn’t stop there. Dr. Drake and her team also influence Siteman Cancer Center’s clinical research.
Using data tracking, the PECaD team works with the cancer center’s cancer registry to identify the specific burdens its community faces that may be ripe for research opportunities. “We do that to make sure that the research conducted in the cancer center meets the needs of our catchment area,” says Dr. Drake. “We make sure that our researchers and our clinicians know what specific needs exist within our community, so they can tailor their research to meet those needs.”
Once PECaD identifies a specific patient need in the community that remains unaddressed, it connects with Siteman’s cancer researchers. “We help our investigators think through ways to alleviate those identified barriers and the importance of that,” says Dr. Drake. After identifying the lack of transportation options to travel to appointments as a barrier to patient participation in clinical trials, Siteman Cancer Center began working with another healthcare organization to provide free transportation to all patients who are participating in clinical trials.
Ensuring Diverse Representation in Research
PECaD team members regularly educate its clinical research coordinators and faculty about the importance of diversity in cancer research and the specific barriers to trial participation experienced by their patient population. “We monitor the diversity of our clinical trials,” says Dr. Drake. "As necessary, we work individually with principal investigators and their clinical research coordinators to help them troubleshoot issues that need to be addressed in order to not only increase a trial’s minority representation, but also its representation of our rural population.”
Dr. Drake and her team make sure to connect with patients early in their cancer journey. They introduce themselves to patients, share high-level information about clinical trial participation, and explain to patients the importance of cancer research. This approach gives patients time to digest the vast amount of information that accompanies a cancer diagnosis, the ability to talk with their oncologist more about the clinical trial offered to them, and the opportunity to speak in more detail to the PECaD team at a following appointment or over the phone.
“Sometimes participants might need additional information to understand the bits and pieces of a clinical trial, so they can feel more comfortable,” says Dr. Drake. “Other times, you may have to approach a participant multiple times. Often the first encounter is during a visit when the patient is understanding with their doctor the severity of their cancer or their treatment plan. In these instances, it may be best to provide information to look over and then reapproach at their next appointment.”
Dr. Drake adds that there are multiple aspects to promoting diversity in clinical trial participation. “Diverse participation in research is a byproduct of increased education, transparency, trust-building, and equitable access,” she says. “We must focus on those things to ensure our patients have the knowledge and trust to make an informed decision that they are comfortable with to participate or not in research.”
Dr. Drake says that everything PECaD does is a team effort. Addressing multiple obstacles to patient care and working to diversify Siteman Cancer Center’s research and clinical trial participants are no easy tasks. “We would like to continue to deepen the reach of all of the things we are currently doing in each of PECaD’s four areas of focus,” says Dr. Drake. “We are trying to think about how we communicate the basic science aspects of cancer to our community, while at the same time talking about the community’s needs to our basic science researchers. That can seem far removed from population-based work, but it still has an impact downstream.”
To learn more about the community outreach and engagement efforts of Sitemen Cancer Center’s PECaD Program visit its website.
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