Despite advances in cancer screening and in more effective therapies to treat the disease, which have led to improved outcomes and increased survival rates for millions of people with cancer, not every American is reaping the benefits of these advances. Disparities in health-care access, quality of care, and cancer outcomes remain stubbornly prevalent among minority populations, and the result is higher rates of both cancer incidence and death from cancer compared to non-Hispanic whites.
According to the American Cancer Society, the death rate for cancer among African American men is 33% higher than it is among their white counterparts, and for African American women, the death rate is 16% higher than it is among white women.1 For specific diseases like breast cancer, black women are 40% more likely to die of their cancer than white women.2
To address the current state of disparities in cancer care, ASCO recently hosted a 3-day meeting with three other leading national cancer organizations, including the American Association for Cancer Research (AACR), the American Cancer Society (ACS), and the National Cancer Institute (NCI). It was the first-ever collaboration among these groups, with the specific goal of guiding future research that better examines the disparities in health-care access and outcomes in minority populations.
The meeting brought together experts in cancer research, epidemiology, public health, and health-care policy, as well as patient advocates charged with reviewing the state of the science, discussing the needs and priorities in cancer disparities research, and developing a set of key recommendations. The recommendations developed by the ASCO/AACR/ACS/NCI think tank will become the basis of a joint statement the group will issue later this year. The Executive Summary will describe the group’s findings on the state of cancer health disparities research and identify the top research needs, with a specific emphasis on funding priorities.
The ASCO Post talked with Blase N. Polite, MD, MPP, Immediate Past Chair of ASCO’s Health Disparities Committee, Chair of ASCO’s Government Relations Committee, and Assistant Professor of Medicine and co–principal investigator of the Center for Interdisciplinary Health Disparities Research at The University of Chicago Medicine, about the formation of this joint partnership and its mission and goals.
Powerful Partnership
Please describe how the formation of the ASCO/AACR/ACS/NCI cancer disparities think tank came about, and why it is necessary to have such a think tank.
Forming a partnership of this type had been in the works for many years. The effort was originally led by Worta McCaskill-Stevens, MD, MS, Past Chair of ASCO’s Health Disparities Committee and Chief of NCI’s Community Oncology and Prevention Trials Research Group, and the idea was that we were really at a point in health-care disparities where we needed to get the ball rolling.
There had been some really good work done over the past 15 to 20 years documenting the extent of disparities in cancer care, but we thought the science had matured to the point where it needed to move on to the intervention phase. We needed to solidify the science and take it to the next level if we were ever going to achieve a decrease and eventual elimination of cancer health disparities.
Originally the idea was to produce a position paper on cancer health disparities research. But as ASCO considered the enormity of the problem, we began moving into a much larger concept of bringing the four major players in cancer care together. ASCO, NCI, AACR, and ACS were all in alignment with this issue, and we thought what a powerful voice we would have collectively to discuss this topic and produce a joint statement declaring where we think the field of health-care disparities research should go.
Underlying Problems
What are some of the reasons for health disparity in cancer research and in cancer care?
The reasons differ depending on the type of cancer you are talking about. The reasons for health disparities in breast cancer are not the same as they are in colon cancer, although there is some commonality among all the cancer types. The main reason for disparities in cancer care is limited access to high-quality care throughout the cancer continuum.
For example, in colon cancer we know that the lower rates of colon cancer screening among minority groups probably accounts for between 50% and 60% of the disparities we see in survival rates in that cancer. In breast cancer the reasons are not as clear. The rates of mammography screening between African American and white women appear to be fairly similar, yet disparities in survivorship exist.
In breast cancer survivorship differences may have to do with several factors, including economic resources, the quality of the mammography, lack of prompt follow-up care, and access to high-quality treatment. I also think differences in tumor biology in black women are contributing to lower survival rates. We know that African American woman are more likely to get more aggressive triple-negative breast cancer than white women, so obviously that will change outcome.
Finally, there are issues of “competing comorbidities.” We know, for example, in the African American community there are higher rates of obesity, diabetes, and hypertension. The question is, how do all these factors play into survival?
Potential Solutions
What are some possible recommendations being considered by the committee members to reduce or eliminate disparities in cancer care?
The executive committee is now working on a detailed recommendation statement that encompasses several areas, and it is still a work in progress. But some of our recommendations will include standardizing how we do this research. For example, we may recommend a CONSORT [Consolidated Standards of Reporting Trials]-like statement for researchers and journal editors on how health disparities research should be conducted and reported. I think there will be some recommendations on the science of how we use ancestral informative markers, the types of information we should be collecting, and questions on how diet and exercise and the genome all play into the development of different cancers.
There will likely be recommendations for how we do community-based participatory research. One problem that has been clearly identified as contributing to difficulties in conducting community research is the impact of grant cycles on relationships with a community. Having a 5-year community participatory research grant and then leaving the community once the funding has ended leaves the community feeling abandoned, so we need to think about how to sustain a baseline level of community engagement. That will have to come from the comprehensive cancer centers, which need to invest in a baseline level of research infrastructure within a community, so that there is never complete disengagement.
There may be recommendations at the academic promotions level to encourage the next generation of researchers to stay in the field. One of the issues we identified at the meeting is that academics doing research in the community often have to spend 2 or 3 years building relationships within the community before they can even put the first research questions into the field to collect the first piece of data. That puts scientists on a typical 7-year promotions clock already behind the eight ball compared to scientists doing laboratory research or retrospective database reviews.
Our feeling is that perhaps we should extend the promotions clock by a couple of years so more young researchers are encouraged to go into the field to produce the kind of intervention data that we need.
We are also looking at the possibility of forming disparity-based research networks in multiple institutions, so if people have research questions on disparities in cancer care, they can go to a network and see if there is interest in launching a study to answer those questions. It would help move us out of our individual silos and start connecting us with researchers throughout the country.
Trial Eligibility
Is the group considering changing the eligibility criteria for enrollment into clinical trials?
We had an entire session devoted to this question of enrollment into clinical trials. The one issue that has clearly been on everyone’s mind for a long time, and one that ASCO’s Cancer Research Committee has been working on, is eligibility criteria for clinical trials. The big question we have is, are we setting up eligibility criteria that are perhaps excluding groups unnecessarily?
Much of the design of clinical trials has built-in legacy eligibility—for example, issues regarding blood pressure. But if you have African American patients with slightly elevated blood pressure, should that be enough to exclude them from a clinical trial? We are looking closely at eligibility criteria to determine what is necessary and what is not, and how groups are being excluded based on things like comorbidities and age.
One of the other issues we are considering, which is probably somewhat controversial, is should clinical trials be designed with racial and ethnic enrollment targets? For example, in order for a clinical study to be powered to answer disparity questions, you may need 20% of the study participants to be African American or members of other minority groups. The way clinical trial enrollment is done now, if our target goal is 1,200 people, once we reach that target, we’re done, and we try to answer whatever disparity questions we can with the number of minority participants we have.
An alternative would be to set specific enrollment goals for racial and ethnic groups such that the trial could close for non-Hispanic whites, but remain open for minority groups. This will likely become increasingly important as we start looking at genomic differences by race and ethnicity, which may impact response to therapy or toxicity.
Underrepresentation of Black Patients
African Americans are particularly underrepresented in cancer clinical trials. Is the legacy of the Tuskegee syphilis study3 preventing more African Americans from enrolling in clinical studies?
If you look at the research on that question, it’s not clear if that is the reason keeping African Americans from participating in clinical trials in greater numbers. In the detailed studies we have done, when minority patients are offered clinical trials, they are just as likely, or even more likely to go on a clinical trial than non-Hispanic whites.
I think the problem lies with our clinical trial infrastructure and not with our patients.
Achievable Goals
The think tank is charged with providing a model for cooperation among various research groups and reaching a diverse audience, including public and private funders, as well as all members of the cancer community. How might those goals be achieved?
Those goals are accomplished by the powerful voice of the four organizations that are well represented in the public and private world. Each of the think tank organizations is a major funder of research, and we are all funding good research in health-care disparities, but we need to change how we do that research. Members of our organization sit on the research review boards of many private foundations, including Stand Up To Cancer, the LIVESTRONG Foundation, and Susan G. Komen, and we have a lot of influence. If these foundations want to fund research in health-care disparities, we can say, “Here are some questions that need to be answered, and here are recommendations that we believe you should be structuring into your review process and review criteria.”
I’m hoping that the integrity and the reputation of our four groups and our broad involvement throughout the cancer-funding world will give the recommendations included in our Executive Summary the credibility and impetus to encourage their use as the model for designing cancer disparities research.
Incredible Passion
What impressed you most about the meeting’s outcome?
What really impressed me at our initial meeting was the incredible passion everyone brought to confronting the racial and economic-based disparities that affect many of our cancer patients and improving their outcomes. We were all on the same page in identifying the problems and developing solutions. That to me was the most encouraging result of the meeting, because we really are ready to take this initiative to the next level in testing and implementing solutions to reduce, if not eliminate, cancer health disparities. ■
Disclosure: Dr. Polite reported no potential conflicts of interest.
References
1. American Cancer Society: Cancer Facts & Figures 2013. Available at www.cancer.org. Accessed June 19, 2104.
2. Centers for Disease Control and Prevention: Health Disparities in Cancer. Available at www.cdc.gov/cancer/healthdisparities. Accessed June 19, 2014.
3. Centers for Disease Control and Prevention: U.S. Public Health Service Syphilis Study at Tuskegee. Available at www.cdc.gov/tuskegee. Accessed June 19, 2014.
