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Charting the Future of Cancer Health Disparities Research: New Recommendations from 4 U.S. Cancer Organizations
BCRF investigator Electra Paskett comments on the status and future of breast cancer disparities research.
Cancer is a complicated disease and person’s risk and outcome after a cancer diagnosis is based on multiple factors from individual risk, to response to treatment, to quality of life after treatment (often referred to as survivorship). Cancer does not discriminate, affecting rich, poor, black, white and all ethnicities. We know, however that differences exist in the incidence and outcomes of cancer across populations.
History of Cancer Health Disparities Research
The field of cancer health disparities research emerged with the civil rights movement of the 1960s. At the same time that inequalities between races and other groups came to the fore of the political and public conversation, research in the inequalities in health care revealed a higher cancer death rate in blacks compared to whites. Those early studies led to research in other racial and ethnic groups, as well as studies in populations defined by age, sex or geographic location (an example is urban vs. rural).
Cancer disparities in incidence and outcomes are multifactorial and extend beyond sociodemographic factors (age, race, ethnicity) to include socioeconomic status, which can affect access to healthcare, environmental factors such as lifestyle (diet, exercise) and geography (i.e. rural vs. urban), cultural perceptions, which may affect screening habits, and biologic factors including family history and genetic predispositions.
Today the field of cancer disparities research comprises many academic disciplines including laboratory and clinical research, public policy, epidemiology and the social sciences, as well as many nonmedical fields such as education, economics, sociology, religion, geography and anthropology. While we've made progress in gaining a greater understanding of the diverse and complex factors that lead to cancer disparities, new questions and challenges continue to emerge.
To address the current and future challenges in disparities research, representative from four leading cancer organizations: American Cancer Society, American Association for Cancer Research, American Society of Clinical Oncology, and the National Cancer Institute convened a think tank in 2015. The group recently published their recommendations in the journal, Cancer Research. The full article can be found here, but briefly, the recommendations from the committee included:
- Defining measures and tools to assess disparities across populations, including standardizing how determinants of disparities such as race, ethnicity and other sociodemographic factors are recorded to be able to spot trends in diverse populations;
- Including more minority representation in major initiative such as the Cancer Genome Atlas, The Precision Medicine Initiative, The Cancer Moonshot Initiative, and in international studies to gain a better understanding of the biologic, environmental and cultural factors affecting disparities in cancer incidence;
- Developing robust quality care metrics and methodologies to ensure equity in health care delivery and patient resources through the continuum of care in low resource settings to reduce disparities in cancer outcomes;
- Increasing community engagement in disparities research strategies to make these studies more relevant to the needs of the community and ensure community support and participation. An important component of this recommendation would be to increase the diversity in the oncology workforce to ensure cultural sensitivity.
- Redesigning clinical trials to include involvement of minority health care teams and community investigators and increase minority participation. This will require education of underrepresented populations on clinical trial participation and reducing other barriers to clinical trial participation in low resource settings including costs to the individual and the institutions, and increasing government support for disparities focused community research.
Breast Cancer Disparities Research
BCRF investigator, Dr. Electra Paskett was a co-author on the report. BCRF spoke to Dr. Paskett to put the report in context of breast cancer.
BCRF: The report describes the very complex landscape of cancer health disparities and the challenges in disparities research. Is there anything unique to the breast cancer disparities landscape?
Dr. Paskett: Breast cancer is unique because it’s one of a few cancers for which we have prevention, early detection and treatment options. This has largely driven the decrease in deaths due to breast cancer, but only in those who have access to care. So, we’ve been able to clearly see that where access to care is limited, disparities in outcomes develop. And this acts as a canary in the coal mine for other health inequities that are not easily detected. We don’t see disparities in pancreatic cancer, for instance because there are no prevention or early detection options and very few treatment options, and it is a very deadly cancer.
BCRF: What do you think are the priorities in breast cancer disparities research?
Dr. Paskett: We need a multi-level understanding of disparities and this requires understanding what is happening at the community level. We know there that patients receive suboptimal care in low resource settings, but the priorities will be different for each community. One community may be lacking mammogram facilities, another may lack a cancer clinic altogether, requiring patients to travel for treatment and follow ups. Community engagement is integral to this process, not only in identifying priorities, but also in educating members of the community and legislature to increase awareness and a sense of urgency, and to ensure successful implementation of interventions and/or policies to address the disparities in that community.
BCRF: We know that African American women have a greater risk of being diagnosed with aggressive cancers early in life and are more likely to die of their disease that white women, but there is still a lot we don’t understand about the underlying causes of this disparity. How will the recommendations from the panel help us to answer some of those questions so that we can prevent or reduce breast cancer deaths in this high-risk group?
Dr. Paskett: First and foremost, we need more minority representation in the national initiatives and clinical trials. The Cancer Genome Atlas, The Precision Medicine Initiative, The Cancer Moonshot Initiative all need to include adequate numbers of minority patients and patient samples to better understand the disease in diverse populations.
Clinical trials are critical to advancing better treatments for cancer, but only about 2-3 percent of all cancer patients participate in clinical trials. Of that, only about 10 percent of clinical trial participants are from minority groups. This creates challenges in extrapolating clinical trial results to the broader population and especially underrepresented groups, such as minorities and elderly patients. I would personally like to see more clinical trial cohorts that are comprised exclusively of a minority group. There are a few examples, but we need to do more.
BCRF: We’ve known about disparities in cancer incidence and outcomes for a long time, why was this report needed and how will it be used?
Dr. Paskett: Yes. We have known about cancer disparities, but it takes time to accept this as significantly driving breast cancer outcomes. As discussions around social justice have gained traction, the timing is right to increase awareness of the current state of cancer disparities research and to chart a path forward to address the current challenges, as well as preparing for future challenges.
We are really at an inflection point where action can have tremendous impact. Our population is aging and we can expect breast cancer cases to increase. The US population is also becoming more diverse and we need to be proactive about how to prevent and treat cancers in diverse groups. Our healthcare system is changing and this can have enormous impact on access to cancer care and preventive services. Technology is rapidly expanding and increasing our capacity to decipher the drivers of cancer. We need to make sure that these studies include understudied populations.
BCRF: What can patients and advocates do to advance the recommendations of the report and reduce breast cancer disparities?
Dr. Paskett: The report was really a call out to researchers, government agencies and policy makers, but advocates can play a big role at the local level in energizing their own communities and increasing awareness of the need to address breast cancer disparities.
Depending on the advocate’s expertise and interest, forming a local breast cancer coalition can increase their potential for community engagement and influence with local government agencies and legislators to create policies to address the barriers to quality breast cancer care and prevention in their communities. The more informed advocates are the greater role they can play in advancing disparities research by directly engaging with researchers or in helping to educate others in the community about the importance of breast cancer screening and participation in clinical trials.
Dr. Paskett is nationally recognized for her work in studying cancer health disparities. Her BCRF-supported research program applies a "team science approach" to improve breast cancer outcomes through a better understanding of the role of diet and breast cancer risk and barriers to breast cancer screening; improving access to diagnostic and treatment services; and prevention of side effects of cancer surgery and treatment such as lymphedema. You can read more about her BCRF research here.