Jun 23, 2014
ASCO undertakes new, expanded initiatives to combat disparities in care and improve outcomes for all
By Virginia Anderson
Cancer health disparities is a term commonly used to describe differences in incidence, prevalence, mortality, and burden of cancer and adverse related conditions among specific population groups. ASCO is actively engaged in efforts to reduce disparities in cancer care and outcomes as part of its overall goal to advance access to and delivery of high-quality cancer care. To this end, the Society is committed to:
- Advancing the education of the oncology community in the care of patients from underserved and/or minority populations;
- Increasing the diversity of the clinical oncology workforce as a requisite to improving access to cancer care for the underserved;
- Supporting research and the development of clinical cancer researchers in the area of health disparities;
- Advocating for public policy that ensures access to cancer care for the underserved and that supports increased clinical cancer research in health disparities; and
- Supporting programs to help eliminate health care disparities in cancer risk assessment and early detection.
As the oncology care community’s understanding of cancer health disparities has evolved and expanded, so, unfortunately, has the population of patients who are known to experience inequity in access to or receipt of cancer care. Furthermore, it has become clear that health disparities in general are intersectional, in that many of the people who do not have access to high-quality care belong to more than one marginalized group, adding layers of complications to an already complex issue.
Falling through the cracks
Among the manifold causes of health disparities, socioeconomic status is a significant contributor. In the United States, despite the full implementation of the Affordable Care Act in 2014, tens of millions of people are uninsured or underinsured. Poverty is frequently associated with lower levels of education and lower health literacy (the ability to obtain and understand health care information for decision-making), which are also barriers to receiving high-quality medical care.
Race and ethnic background are perhaps the best-known factors in health disparities, supported by a large body of research. Some disparities may have a basis in biology; for example, even when controlling for other variables, highly aggressive forms of breast cancer are more common among black women compared with white women, and incidences of common cancers among Asian-Americans correlate with different countries of origin. Such biologic differences are likely to be further elucidated with continued advances in genomics and molecular medicine.
Many health disparities, however, are the result of societal-related marginalization, and the resulting distrust felt by these populations toward societal institutions, including the medical community. This includes members of historically oppressed minority racial and ethnic populations; members of the lesbian, gay, bisexual, and transgender (LGBT) community; and those who are subject to prejudice because of mental and/or physical disabilities or obesity—groups that are likely to have experienced institutional discrimination generally and lack of sensitivity and awareness among health care providers specifically.
“In addition to racial and ethnic minorities, we have a lot of data demonstrating health disparities among other groups, including the LGBT community, likely centered around a lack of sensitivity toward that community and a fear of seeking out health care,” said Gina M. Villani, MD, MPH, 2014-2015 Chair of ASCO’s Health Disparities Committee. “Mentally ill individuals have a lot of risk factors for the development of cancer and a very difficult time accessing care and receiving care that is sensitive to their needs, and the same is true for those with physical disabilities in terms of access and sensitivity. We also have a lot of data demonstrating that people face discrimination based on their weight, and obese individuals frequently have multiple medical needs and comorbid conditions.” Dr. Villani is the CEO and Medical Director of the Ralph Lauren Center for Cancer Care and Prevention, which provides oncology services to underserved populations in New York City.
Marginalized patients may experience disparities throughout the continuum of care. Minority populations:
- Are less likely to participate in cancer prevention programs, including cancer screenings, and are less likely to use genetic testing to identify whether or not they have increased cancer risk;
- Are more likely to experience delays in the diagnosis of cancer, and more likely to be diagnosed with an advanced stage of cancer, leaving these patients with fewer treatment options and lower survival rates;
- Are less likely to receive recommended care and are more likely to be admitted to the hospital for potentially preventable conditions;
- Are more likely to receive lower quality of medical services, including less access to specialists; and
- Overall, experience a higher total incidence of cancer and a higher total death rate.
“It’s incredibly challenging to provide care to a person with a myriad of needs, in which their cancer is just one item on the list,” Dr. Villani said.
Every patient deserves high-quality cancer care
Achieving health equity and overcoming health disparities form a core part of ASCO’s vision and appear as the first point in the Society’s Mission Statement: “All patients with cancer will have lifelong access to high-quality, effective, affordable, and compassionate care.” On the front lines of this commitment are the members of ASCO’s Health Disparities Committee, who will be pursuing a number of large-scale initiatives over the next several years in the service of ensuring that high-quality cancer care is available to every patient.
Education has been identified as a top priority and represents a significant opportunity for ASCO to address cancer health disparities. Currently ASCO’s clinical practice guidelines include considerations for special populations. Efforts are underway to make this information more robust, identifying access issues to particular treatments for which cost or insurance coverage may be a factor, and addressing any known differences in outcomes in specific patient populations. ASCO also worked with a multidisciplinary group of 11 other organizations to develop a set of interdisciplinary learning activities on disparities in cancer care and cultural competence for intensive practical learning, available on ASCO University®.
In order to help oncology care providers assess health disparities and the level of care delivered in their own practices, ASCO has incorporated several measures into the Quality Oncology Practice Initiative (QOPI®, the Society’s physician-led quality reporting and improvement tool) to assess health equity. Demographic questions have recently been integrated in QOPI to assess patients’ medical insurance status, gender, and race/ethnicity, and the practice’s percentage of non-English speaking patients and availability of interpretation services.
In an effort to address the socioeconomic barriers to high-quality care, members of the Health Disparities Committee have authored a policy statement on Medicaid reform, slated to be published in an upcoming issue of the Journal of Clinical Oncology.
Medicaid patients face significant limitations in terms of access to care. At the Ralph Lauren Center, Dr. Villani organized a “secret shopper” experiment which found that patients with Medicaid frequently encounter significant delays between calling to make an appointment for an oncology consultation and actually seeing a doctor—in one case, the wait was 53 days.
The policy statement details ASCO’s recommendation on the necessary changes required to ensure that patients with cancer who have Medicaid can receive the same timely, high-quality cancer care as patients with private insurance. Some of these recommendations include:
- Expanding insurance coverage for individuals below the federal poverty level in all 50 states;
- Ensuring oral parity for patients with Medicaid coverage, and including oral and intravenous cancer therapies as well as supportive care medications as exempt services for cost-sharing purposes;
- Extending clinical trial protections included in the Affordable Care Act to patients with Medicaid coverage and allowing patients with Medicaid coverage to cross state lines to participate in those trials; and
- Requiring coverage for genetic testing, without deductibles or co-pays, in any patient deemed at high risk for an inheritable cancer
- risk syndrome as defined by published guidelines.
The statement will be used to help ASCO engage in advocacy with members of Congress and federal agencies to promote its recommendations and raise awareness among policymakers about the importance of Medicaid reform.
“The Health Disparities Committee is very focused on translating ASCO’s recommendations into actual policy—the improvements are laid out in our statement, and we’re ready to put some teeth behind them,” Dr. Villani said.
Diversity: A critical component
A lack of diversity in the oncology workforce may also contribute to health disparities for patients. According to a 2011 ASCO study and recent U.S. census data, of more than 13,000 oncologists practicing in the United States, only 28% are women (women make up between 50% and 51% of the general population). Approximately 17% of medical students are black, Hispanic, or American Indian/Alaska Natives, even though these groups make up approximately 31% of the general population, and the proportions of these racial/ethnic minorities are even smaller among oncology fellows and residents. (Visit asco.org/diversity for more information on oncology workforce demographics).
ASCO operates several programs actively engaged in bringing individuals from populations underrepresented in medicine into the oncology specialty through its Diversity in Oncology initiative, including award and mentoring opportunities for individuals at the medical student, resident, and fellowship level. “A more diverse workforce means that you have more people with a deeper understanding of and greater sensitivity to different populations,” Dr. Villani said.
The Conquer Cancer Foundation of ASCO supports two funding opportunities designed to facilitate the recruitment and retention of individuals from populations underrepresented in medicine to cancer careers and increase access to quality care for underserved communities. The Medical Student Rotation for Underrepresented Populations (MSR) provides eight- to 10-week clinical or clinical research oncology rotations for U.S. medical students from populations underrepresented in medicine who are interested in learning more about the field. The Resident Travel Award for Underrepresented Populations (RTA) provides financial support for residents from underrepresented populations to attend the ASCO Annual Meeting, where they have an opportunity to meet oncologists and to learn more about career possibilities in oncology.
ASCO’s Diversity Mentoring Program is designed to encourage medical students and residents who are underrepresented in medicine to pursue rewarding careers in oncology by educating physicians-in-training and fostering relationships with experienced oncology professionals who can provide career and educational guidance and serve as a professional resource. The program is structured so that mentoring can be conducted remotely via phone, email, instant messaging, and video chat, allowing relationships between mentors and mentees to develop across geographic barriers.
Disparities Think Tank: A collaborative effort
ASCO recognizes that no single organization can fully eradicate health disparities, and that success is only possible through collaboration. In February 2014, ASCO convened a joint think tank on cancer disparities research with the American Association for Cancer Research, the American Cancer Society, and the U.S. National Cancer Institute in an effort to bring together key stakeholders in cancer care for high-level discussion. Participants included experts in clinical cancer research, epidemiology, public health, health care policy, and patient advocates, who met to develop strategies and implement a plan to best utilize data from programs that target racial and ethnic minorities and underserved populations and to maximize the use of data that is collected from all institutions to reduce cancer disparities.
Based on the think tank discussions, the four organizations are currently working together to develop a position paper identifying top research needs in cancer disparities, with special consideration to those areas that are currently not being funded adequately.
The promise of CancerLinQ
In the words of the civil rights leader Dr. Martin Luther King, Jr., “The arc of the moral universe is long, but it bends toward justice.” Progress against health disparities is possible, but as with all complex problems, change will be incremental. As compassionate and dedicated members of the oncology community work toward truly just and equitable delivery of care, how can physicians be sure they are providing sufficiently high-quality care and good outcomes to marginalized patients in cases where scientifically defined “optimal” care currently is not possible? ASCO’s rapid learning health system, CancerLinQ™, is poised to serve as a valuable resource for ensuring that patients affected by health disparities are receiving the best possible care.
Most oncologists are familiar with the statistic that only approximately 3% of adult patients with cancer participate in clinical trials, and among that 3%, minority and marginalized populations are significantly underrepresented. As with all aspects of health disparities, the reasons for underrepresentation are manifold. In some cases, the issue is access—patients already living in poverty or in geographically underserved areas may not have the means to undertake additional clinic visits required for participation. In others, feelings of distrust for the medical community and fear of being treated as “guinea pigs” may prevent patients in minority groups from choosing to engage in a clinical trial. And in others, strict selection criteria prove to be an obstacle, preventing patients who have comorbid conditions related to physical disabilities, obesity, or advanced age from participation.
CancerLinQ, however, has the potential to provide physicians with information based on potentially millions of real-world patient encounters, offering context and data on how patients affected by different and intersecting health disparities are being treated and how the best possible outcomes might be reached.
Dr. Villani noted chemotherapy dosing as one area in which CancerLinQ could provide answers for oncologists treating patients in marginalized populations. “If you have a population that is absolutely frightened of chemotherapy and has a huge distrust for the medical profession to begin with, multiple comorbid conditions, and not enough social support, and that person experiences significant toxicities from their first chemotherapy, they’re not coming back. We have to be really careful to walk a fine line between following the letter of the clinical practice guideline and keeping the patient engaged in care,” she explained. “We’re working in a world where patients have multiple comorbidities and psychosocial issues, and we need to know how much wiggle room we have without giving inferior care.”
New ASCO University® Series Promotes Cultural Competence among Cancer Care Providers
The need for cultural competence among cancer caregivers is great, as patients represent diverse demographics and care settings vary substantially. To address this need, ASCO University® has introduced “Disparities in Cancer Care,” a three-course series designed to increase awareness of the multifactorial array of health disparities: racial/ethnic/cultural, socioeconomic/ education, access to care, age, obesity, workforce, gender, and sexual orientation.
The first course in the series, “Disparities in Cancer Care: Do You Know . . .?” is a 25-question self-assessment course, designed to help individuals from a multidisciplinary team in oncology assess their baseline knowledge on the topic. Participants will identify key barriers to cancer care among different racial, cultural, ethnic, and socioeconomic groups, apply knowledge of disparities in oncology to the care of disparate patient populations, and demonstrate methods to overcome communication gaps between cancer caregivers and patients.
“Cultural Competence for Oncology Practice,” the second course in the series, is a slide-based course that focuses on enhancing care professionals’ confidence and sensitivity when interacting with patients from diverse backgrounds. The course discusses different encounters that oncology care providers and patients face during treatment and identifies barriers related to cultural competency that might arise during interactions. Through case studies, participants will learn about appropriate communication strategies to minimize cultural issues that may affect care.
The final course in the series, “Disparities in Cancer Care: Take Action,” also a slidebased course, discusses disparities in cancer care as they relate to socioeconomic status, access to care, age-related issues, and obesity. The three sections of this course examine these issues through the lens of patients, health care providers, and institutions providing care. Participants in the course will analyze and apply strategies that institutions and oncology professionals can implement to address challenges relating to health disparities.
The Disparities in Cancer Care courses are available on ASCO University (university.asco.org/disparities). As the courses are designed to target a broad audience, they are accredited by three different providers— ASCO, the Oncology Nursing Society, and the American Pharmacy Association. Continuing medical education (CME), continuing nursing education (CNE), and pharmacy education credits are all available. Course participants can obtain Certificates of Participation and Completion for documentation. Additional information about all Certificate types is available in each course.
ASCO and the LIVESTRONG Foundation worked with a multidisciplinary planning group of 11 other organizations to develop the course, ensuring that it appeals to a broad audience including (but not limited to) oncologists, social workers, pharmacists, nurses, radiation specialists, and any other member of a multidisciplinary oncology care team. This program is funded through the Conquer Cancer Foundation of ASCO by a grant from the LIVESTRONG Foundation.
This article won the 2015 APEX Award in the Writing – Feature Writing category.