Overcoming barriers to cancer prevention and care
Although scientists know more about cancer today than ever before, racial and ethnic minorities bear a disproportionate burden of cancer across the disease spectrum. Disparities also affect those whose age, income, health insurance status, geography, or socioeconomic position raises barriers to cancer prevention and care. The Cancer Disparities Program-in-Development aims to reduce these inequalities by advancing research, intervening to improve outcomes, and communicating health information more effectively.
Linking understanding to action
“Our program brings together world-class researchers to look at cancer disparities through several different lenses – social epidemiology, behavioral science, communications, and policy,” says Co-leader Karen Emmons, PhD (DFCI), who serves with Program Leader Howard Koh, MD (HSPH). “By increasing our interactions with disease programs, we hope to extend that perspective from prevention through end-of-life care.”
In one such effort, Emmons and colleagues from the DF/HCC Gastrointestinal Malignancies and Cancer Epidemiology Programs are conducting a study to examine the role of vitamin D in preventing colorectal cancer among African-Americans. Compared to whites, African-Americans have about half the levels of vitamin D, likely due to the melanin content of their skin. Thus the main purpose of this study – which also includes investigators Charles Fuchs, MD (DFCI), Edward Giovannucci, MD (HMS), Gary Bennett, PhD (DFCI), and Bettina Drake, PhD (DFCI) – is to find the optimal level of vitamin D supplementation expected to be protective among this population. The timing of the study is especially crucial.
“Right now, there’s a movement toward making recommendations about vitamin D supplementation based on studies done mostly in whites,” says Emmons, professor of Society, Human Development, and Health at DFCI and HSPH. “If those recommendations become national policy and we don’t know whether those levels are adequate for African-Americans, we could in fact see disparities increase. So it’s important that we conduct this research.”
The double-blind, placebo-controlled study began enrolling subjects this winter. After its completion, Emmons plans an intervention study to assess the impact of supplemental vitamin D on specific biomarkers, which are early indicators of risk for colon cancer. “We hope to determine a safe and relatively inexpensive strategy for reducing risk that would be accessible to all African-Americans,” says Emmons. “It’s very exciting to think we could have a profound impact among populations that consistently have a higher cancer burden.”
Disparities in colorectal cancer began to emerge decades ago with the introduction of colon cancer screening, notes Emmons. “In essence, whites may have a double advantage because of their higher levels of vitamin D and better access to screening, compared to African-Americans. Our vitamin D study is one opportunity to right that situation.”
Disparities in access to genetic testing
In other research, Alexandra Shields, PhD, an HMS faculty member at the Institute for Health Policy at MGH, has surveyed primary care physicians (PCPs) to assess their experience with genetic medicine and their preparedness to incorporate genetic testing into clinical practice (see article in the Journal of Genetics and Medicine). As director of the Harvard/MGH Center on Genomics, Vulnerable Populations, and Health Disparities, Shields sees genomic medicine as one of the next transformative influences on the health care system.
Her national survey of physicians showed that minority-serving PCPs are significantly less likely to have ever referred a patient for genetic testing to any site (OR: 0.60, p<0.05) or to have ever ordered a genetic test for breast cancer (OR: 0.42, p<0.01) or colon cancer (OR: 0.39, p<0.01). The survey – the first of its kind to study utilization of genetic tests and referrals among minority-serving physicians – underscores the need to track access to genomic medicine among underserved populations, says Shields.
“We know that PCPs face great challenges incorporating genetic testing into clinical care. This study shows that minority-serving physicians face even greater barriers and will need additional outreach and support to provide genetically tailored cancer prevention to patients.” To the extent that such prevention strategies are effective, adds Shields, reduced access to genetic testing among minority patients may exacerbate health disparities.
Because the reasons for underutilization are unclear – perhaps physicians are not offering genetic tests or patients are unwilling to have them – Shields has received RO1 funding to investigate the knowledge, attitudes, and beliefs of patients about genetic testing and the role of genetics in disease. She is also planning a new study to assess barriers facing minority-serving and under-resourced physicians, factors that might include lack of education, training, resources, and infrastructure (nearly half of PCPs have small practices). “For us to leverage genomic research to improve the health outcomes of the underserved, we need to address many points along the trajectory from research to clinical practice.”
Uncovering reasons for communication inequalities
Just as the benefits of genetic medicine are distributed unequally across populations, so too are the benefits of health communication. Studies have shown, for example, that people with higher incomes are better able to take advantage of health education campaigns than are people with lower incomes.
Research in health communication is the focus of Vish Viswanath, PhD, associate professor of Society, Human Development, and Health (HSPH and DFCI), who studies communication inequalities and how they influence health disparities. Although his work has identified many social determinants – factors including race, class, neighborhood, gender, and income – little is understood about how these factors actually affect someone’s ability to access, process, and act on medical information.
“To develop appropriate, evidence-based interventions, we need to understand the reasons behind these inequalities,” says Viswanath, who has applied for a P50 grant to fund a center called Communications Research to Eliminate Disparities. The goal of the center, which Viswanath will lead, is to examine how class, race, and ethnicity influence communication and disparities at different stages of the cancer continuum. Investigators will study communication inequalities within the context of three key areas:
- genetics: communicating genetic differences that may affect smoking cessation options and cancer prevention
- survivorship: providing information about survivors’ medical and nonmedical needs (dealing with insurance companies, taking time off from work)
- end-of-life care: explaining the quality-of-life benefits of palliative care vs. aggressive treatment
As Viswanath acknowledges, the center is undertaking a huge task in exploring the myriad issues that contribute to communication inequalities and in seeking relevant interventions to reduce disparities. But such research is imperative. “You may have a great brochure, but that doesn’t mean people can access it, comprehend it, or act on it,” he says. “You really need to understand how, when, and where people want to receive health information.”
Calling all junior investigators
When Karen Donelan, ScD (MGH) joined the Executive Committee of the Cancer Disparities Program, in 2004, she was asked to develop a new seminar. While scouting for ideas, she discovered that many junior investigators doing cancer disparities research – some of whom were themselves from underserved groups – were working in relative isolation within their clinical departments and without the benefit of a senior faculty member to mentor them. She proposed an initiative to change all that.
Donelan envisioned a social and academic network that would help develop the careers of these investigators – graduate students, postdoctoral fellows, and junior faculty interested in pursuing cancer disparities research. “Our biggest goal was to connect junior investigators to one another, align them with mentors, and link them to the data, collaborators, and money that give investigators a leg up in accelerating their careers,” says Donelan.
Working with Karen Burns White (DF/HCC), Donelan launched the initiative four years ago with a poster session at HSPH. In subsequent years, poster sessions have coincided with the HMS Minority Health Policy Annual Meeting, providing a built-in audience for presenters to discuss their work with senior investigators and research sponsors.
Following the success of the first poster session, now an annual event, Donelan surveyed participants and other DF/HCC investigators to find out what topics would be helpful to them. With this feedback, she organized a series of monthly seminars that give junior investigators a chance to network with senior researchers, develop collaborations, find funding, and learn how to build a career in health disparities. (See upcoming Poster Session and Seminar Series.)
“We’re reaching out to a new generation of researchers who reflect a broad range of our society,” says Donelan. “We want to celebrate and support these investigators.”
– Lonnie Christiansen