NCI Restructures Effort to Reduce Disparities Cancer Disparities Among Various Groups

BETHESDA—The National Cancer Institute will rename and restructure its Office of Special Populations Research as part of its increased efforts to reduce disparities in the prevention, screening, diagnosis, and treatment of cancer among various US subpopulations.

The new NCI center will consist of three branches devoted to research, communications, and health policy, according to Harold P. Freeman, MD, president and chief executive officer of North General Hospital, New York. Dr. Freeman, who also serves as chair of the President’s Cancer Panel, heads the new NCI organization on a part-time basis.

“We will be driven to understand the real variables that are causing disparity, and to try to understand these things in a universal way, when there are universals, and to try to understand the factors that are specific to specific groups,” he told the National Cancer Advisory Board (NCAB). He called the task “daunting but doable.”

Health disparities among various racial, ethnic, cultural, and socioeconomic groups in the United States have drawn increasing attention, not just in cancer but in health care in general. The federal government’s Health People 2010 program lists eliminating such gaps as one of its central goals.

Dr. Freeman gave the NCAB members a status report on what is tentatively being called the Center to Reduce Cancer Health Disparities and described his views on the issues the center will address. From his 32 years in surgery, oncology, and cancer policy, three major issues appear particularly important in informing the search for the causes of health disparity, he said.

“Number one, I believe, poverty is an overwhelming factor because it is associated with a lack of resources and a lack of knowledge. This is a universal factor.”

A second factor is culture, which is important in determining what diseases people may develop and how they will respond when they need to do something about an illness.

“The interface and interrelationship between the lack of resources and culture is something we need to know more about,” Dr. Freeman said.

Third, the effects of social injustice play a significant role. “I believe that when people have been denied the opportunity for economic and educational advancement because of factors of injustice, this also plays into the causes of disparities,” he said.

Noting the existing efforts within NCI, Dr. Freeman suggested that the new center might have the opportunity to synergize activities across the Institute’s divisions and elevate cancer disparity to new areas of concern.

“We do not believe this center should reinvent any wheels,” he said. “We believe we should look at the wheels that have been invented, make sure they are all on the same vehicle, and perhaps move the discussion further forward.”

Scientific discoveries have contributed greatly to increased survival and improved quality of life for Americans, Dr. Freeman said. At the same time, a heavier burden of disease is borne by the poor and the medically underserved. “One of the things this center must do is more precisely define who these populations are that are not well served,” he said.

The Disconnect

Dr. Freeman expressed his belief that “the unequal burden of disease in our society is a challenge to science, but it is also a moral and ethical issue for our nation.” Sounding a theme from the 1999 report of the President’s Cancer Panel, he spoke of the “disconnect” between research discoveries and the delivery of these results to the public.

“This disconnect is in and of itself a predeterminant to the unequal burden of cancer,” he said. “To know something through discovery is one thing, but you have to be able to apply these things to be able to help humanity.”

Historically, researchers have framed the issue of health disparities in terms of race and ethnicity and, indeed, the office of Management and Budget directs federally funded researchers to use specific racial/ethnic breakdowns in reporting data. Many researchers now argue that such categories can obscure both the biological and social causes of disparities.

“There is no biological basis for racial classifications,” Dr. Freeman said. “However, the consequences of the racism inherent in racial classifications have, for some racial and ethnic groups, been associated with fewer social, education, and economic opportunities; greater exposure to stress and unsafe environments; and reduced access to quality health care.”

And he added, “It is very critical to determine the real variables that cause disparities. It is simply not enough to go with the assigned categories as we have in the past.”

Structure of the New Center

As now envisioned, the new Center to Reduce Cancer Health Disparities will be headed by an associate NCI director, who will report directly to the Institute’s director. The center leadership will include a deputy director and an assistant director for interagency partnerships.

The special populations research branch will focus on epidemiologic, intervention, and surveillance studies aimed at reducing the risk, incidence, and mortality of cancer, particularly among groups that have the greatest burden of cancer.

The communications branch will be concerned with effective ways to communicate new findings about cancer treatments, diagnosis, and prevention to these groups.

The health policy branch will play an important role in assisting policymakers to understand the causes and cures of disparities, Dr. Freeman added. “No matter what we are doing in research, we have to affect the real people,” he said. “We need to bring strong evidence and experts together to provide policymakers all the information that they need to make decisions.”