Organizations and Researchers Strive to Address Disparities in Cancer Care

Abstract

Editor's note: This is Part 2 of a 2-part series. Part 1 appeared in the February 15th installment of “CancerScope.” The concept of patient navigation—helping underserved populations gain better access to cancer screening and treatment—has taken hold across the country. At Massachusetts General Hospital (MGH), for example, Beverly Moy, MD, MPH, leads a patient navigator program that works with various community practices to increase access to breast, cervical, and colorectal cancer screenings among refugee populations. “These programs are successful because navigators help break down the barriers that our most vulnerable patients have, including their different cultural backgrounds and financial challenges,” she says. “The navigators ensure that the screenings happen and that if patients have abnormal results, they have the necessary diagnostic follow-up.” Patient navigation was first developed in 1990 by physician Harold Freeman, MD, when he launched the first such program in the Harlem area of New York City. Since then, many organizations and hospitals have adopted the idea, and in 2007 Dr. Freeman established the Harold P. Freeman Patient Navigation Institute, which provides training for patient navigators. Dr. Moy points out that funding for the programs continues to be a challenge, as does research. “There are a lack of studies in the literature showing the success of these programs and how patients do on them,” she says, noting that she recently presented the results of a small study evaluating outcomes for patients who participated in the MGH program. The study, presented at the Cancer Therapy & Research Center–American Association for Cancer Research San Antonio Breast Cancer Symposium in December 2011, found that the breast cancer care for patients in the program was comparable to American Society of Clinical Oncology (ASCO)/National Comprehensive Cancer Network quality measures. Future studies should include a prospective analysis of the quality of care received by these patients compared with those who are not program participants, Dr. Moy notes. The American Cancer Society (ACS) has 134 patient navigator programs across the country in institutions that treat a high percentage of the medically underserved. The navigators work with patients to develop a plan and find the necessary resources to make their treatment possible, ranging from helping with food assistance to finding transportation, notes Angelina Esparza, director of health equity at the ACS. “We have a fragmented system, and it's difficult for individuals to get through,” she says. “Even well-educated patients have trouble accessing and getting through it.” Many underserved patients are unaware of the numerous resources available to them in the community, such as food banks and utilities assistance, Esparza adds. For many people who struggle with getting food on the table every day for their families, cancer treatment takes a back seat. Patient navigators can help them gain assistance while ensuring that they receive appropriate cancer care, she notes. ACS leaders also are working with other organizations to determine common outcome measures for patient navigation. They recently led a National Patient Navigation Leadership Summit, which proposed specific measures. Their findings were published in a supplement to Cancer.1 In addition to supporting patient navigators, the ACS funds community health advisors who bring people into the health care system through screenings or various health promotions. These advisors work one-on-one with individuals in “hard-to-reach” populations, ranging from those in rural areas to underserved racial/ethnic groups. In July 2011, the ACS received a $2 million grant from The Walmart Foundation to fund community health advisors in select underserved communities. The grant provides $300,000 each to increase access to breast cancer screening for African American women in 3 communities: Jackson, Mississippi; Minneapolis, Minnesota; and Portsmouth, Virginia. In addition, 30 communities across the country each received grants of $30,000 to support existing community health advisor programs for breast and colon cancer screening. “Community health advisors have a slightly different skill set than that of patient navigators,” Esparza says. “They understand who and how to reach people in these communities.” According to Cancer Facts & Figures 2011, published by the ACS, disparities predominantly arise from inequities in work, wealth, income, education, housing, and overall standard of living, as well as social barriers to high-quality cancer prevention, early detection, and treatment services.2 In addition, individuals of lower socioeconomic status are more likely to engage in behaviors that increase cancer risk such as tobacco use, physical inactivity, and poor diet. Since 1999, the ACS has funded 117 studies totaling $99 million devoted to poor and medically underserved populations. Meanwhile, the National Cancer Institute (NCI) dedicates numerous resources to attacking the problem through its Center to Reduce Cancer Health Disparities (CRCHD). Primarily, it does so through supporting research and training students and investigators from diverse populations. In an effort to ensure that targeted underserved communities are involved in key research initiatives, the center uses a community-based approach, according to CRCHD Deputy Director Deborah Duran, PhD. “The community's leadership is at the table to make decisions and to be involved in the research itself,” she says. For example, Native American tribal councils are consulted regarding research design so that researchers can learn how to be culturally sensitive to the group they are studying. One CRCHD program that helps to bridge the gap between researchers and the communities they are attempting to study is Partnerships to Reduce Cancer Health Disparities, which creates a partnership between NCI-designated cancer centers and institutions that serve racial/ethnic minorities. “The 2 centers come together to help train and develop the minority-serving institutions to do meritorious cancer research,” Dr. Duran says. The cancer centers provide the minority-serving institutions with equipment and resources to conduct such research, whereas the minority-serving institutions provide the cancer centers with access to diverse populations as well as strategies for reaching them. In that way, both entities benefit. A partnership between Dana-Farber/Harvard Cancer Center in Boston, Massachusetts, and the University of Massachusetts at Boston (UMB), for example, has provided mentored internships in basic, clinical, and population research as well as ongoing work opportunities for UMB students, 85% of whom identify as either black or Hispanic. The comprehensive partnerships can include everything from screenings and recruitment to clinical trials and biospecimen and data collection. Achievements include approximately 500 publications by trainees in minority institutions, the establishment of tissue banks in Puerto Rico, and increases in colorectal cancer screening among Native American tribes in Arizona. CRCHD also supports the Continuing Umbrella of Research Experiences program, which creates a pipeline of medical research career training opportunities for underserved populations beginning in high school and continuing until an investigator's first National Institutes of Health R01 grant. To date, approximately 2000 individuals have been trained. The high school experience includes a 6- week summer program at a university at which students gain hands-on exposure to cancer research programs such as genomics, molecular biology, and technology development. “It gets them excited about science and opens up opportunities that they may not have thought about,” says Mary Ann S. Van Duyn, PhD, MPH. Not only do older trainees receive a stipend for training and research, they also take part in a professional development workshop during which they participate in a mock review session for a grant application. “We know that successfully obtaining their first R01 is correlated with having a study section, so this mock review is another unique feature that helps trainees with their career development,” Dr. Duran adds. ASCO also has a Diversity Oncology Initiative that provides awards to medical students and residents who represent underrepresented populations, Dr. Moy notes. The program funds 8-week to 10-week medical rotations in clinical or clinical research oncology in which recipients are paired with a clinical oncologist who provides ongoing academic and career guidance. ASCO also supports resident travel awards for residents to travel to their annual meeting. Derrick Cox, MD, an African American surgical oncologist in St. Petersburg, Florida, benefitted from both the resident travel award as well as the first Cancer Health Disparities fellowship, cosponsored by the ACS and the Society of Surgical Oncology. At ACS, he worked on numerous cancer health disparities research projects, including one entitled, “Persistent Disparities in Liver Transplantation for Patients With Hepatocellular Carcinoma in the United States, 1998 Through 2007.” This study was submitted as a poster presentation to the American College of Surgeons Annual Clinical Congress in Washington, DC, and later led to a publication in Cancer.3 As the science of disparities research advances, researchers also are attempting to collect more biospecimens from underserved communities. This need has led to yet another CRCHD program known as the Geographical Management of Cancer Health Disparities, which involves 6 regions and 100 partnering institutions nationwide. Scientists know that biological differences exist among various ethnic groups and that understanding them is crucial to developing tailored medicine, Dr. Duran says, adding that the next step is to determine whether these differences lead to a disparity. As increasing advances occur in personalized medicine, a lack of these types of data has the potential to cause even greater disparities, she notes. For example, the predominant type of breast cancer in African American women is triple-negative breast cancer, for which there are no targeted medicines. “One way to increase biospecimen collection for these groups is to ensure community involvement,” Dr. Duran says. “Our work with communities has the dual goal of biospecimen collection as well as education and awareness.”