The new NCI Center to Reduce Health Disparities will step beyond the Institute’s mission of advancing cancer research, and attempt to influence policy, said Harold Freeman, director of the new center.
“I believe it’s very critical for us to begin to think of how we can gather information that will bring evidence that can influence policy,” Freeman said to the NCI Special Populations Working Group Oct. 30.
Freeman, who is also the chairman of the President’s Cancer Panel and the CEO of North General Hospital in Harlem, made the point repeatedly, both on his own and in response to questions from the group that advises the soon-to-be-abolished NCI Office of Special Populations Research and will advise Freeman’s center that will replace it.
Freeman said he joined NCI in order to pursue the center’s ambitious new agenda. “I don’t think my coming to this thing is about business as usual,” Freeman said. “I could stay in New York if that was the case.”
According to Freeman, the Institute’s focus on cancer research, education, and communications is insufficient to solve the problem of poor health outcomes observed in some ethnic groups. “I think that we must take position that we want to end up changing America,” Freeman said.
These remarks are surprising because officials at science-based agencies rarely talk about asking research questions for the purpose of influencing policy. Also, by law, employees of the Executive branch are prohibited from lobbying and are limited to answering questions from Capitol Hill. Thus, efforts to shape policy from within often have a stealth quality that involves behind-the-scenes, after-hours communications to ensure that legislators ask the desired questions.
Freeman is not an ordinary government official. In fact, he joined NCI under extremely unusual circumstances. At a meeting last March, he challenged Institute Director Richard Klausner on NCI’s commitment to studying the problems of the underserved, and Klausner responded with a job offer (The Cancer Letter, Sept. 15).
Freeman agreed to devote one day a week to the new job, and remained on the President’s Cancer Panel. As a “special government employee,” he can work up to 130 days for the Institute, including the time he spends on President’s Cancer Panel. Also, Freeman’s office was elevated to the status of “center,” the only one of its kind at NCI.
It is unclear how Freeman’s center will coexist with the NIH center that is likely to be formed to study all health disparities.
The House and Senate earlier this week passed similar bills directing NIH to create the National Center on Minority Health and Health Disparities. The two bills remain to be reconciled by House and Senate conferees. Under the new legislation, the NIH center would have the budget of $100 million.
The budget of the NCI center has not been finalized. According to the Bypass Budget for fiscal 2002, the Institute would like to spend $44.6 million on research projects administered through the new center.
Freeman’s remarks to the working group notwithstanding, the NCI plan does not propose taking the center outside the realm of Institute activities and makes no mention efforts to influence policy. The plan for the center was put together by Freeman, Klausner, Barbara Rimer, head of the NCI Division of Cancer Control and Population Sciences, and Jon Kerner, assistant deputy director for research dissemination and diffusion at Rimer’s division.
Nonetheless, describing his plan to hold “think tank” meetings of experts, Freeman used the word “we,” suggesting that others at NCI share his vision of influencing policy.
“We believe that we need to have the ability to raise reasonable questions that we believe should be answered, and which have the potential of calling in the best minds in the world to help us to come to some answers,” he said at the working group meeting. “We hope that through this kind of evidence—with NCI behind us—we could raise certain questions to our policy makers.
“We certainly have no control over them, but [if] we can bring evidence in a certain way, we might have a chance of influencing policy. We believe that reducing cancer disparities has a policy ramification. Not just a research question, but policy,” Freeman said.
The plan described by Freeman would propel NCI in the direction of application of research. This is consistent with the view of the American Cancer Society that federal cancer programs do not pay sufficient attention to the application of research.
Recently, the society funded efforts to rewrite the National Cancer Act of 1971 in a way that may dilute NCI’s leadership of what is known as the National Cancer Program. Freeman is a past president of the Society and a member of its board of directors.
While supporters of the ACS efforts say that the cancer program is not applying everything that is known about the disease, NCI officials say that the new findings and interventions in cancer do not justify rewriting the fundamental document of the federal government’s war on cancer (The Cancer Letter, Sept. 22).
Freeman said application of research is consistent with the original vision of the architects of the National Cancer Act.
“In the beginning, people who drove the National Cancer Act, like [philanthropist] Mary Lasker, felt that research was sufficient to apply,” Freeman said at the working group meeting.
“Since Medicare and Medicaid had been passed in 1965, there was a general feeling that universal access to health care was going to occur,” Freeman said. “That was on the minds of the people who passed this Act.
“I think that as we go forward with the new center, we must go forward with the concern that not only do we need to discover things, but there also has to be a concern that we have a way to change people’s lives,” Freeman said.
Was research sufficient in 1971 to warrant launching a government campaign to apply what was known? Does the current state of research warrant a rush to apply the findings? Is NCI in a position to go beyond studying health disparities and launch a campaign to eliminate them?
“When you [refer to] Mary Lasker, she is dead wrong when she felt that we knew what to do and all we needed to do is apply it in 1971,” Joe Harford, NCI associate director for special projects, said to Freeman at the working group meeting.
“I am not taking away from everything she accomplished, but the research accomplishments between 1971 and the year 2000 stand as their own testimony for what remained to be done,” Harford said.
“I think in the area of health care delivery and application, there are still numerous questions, and I would hope that Special Populations Networks would be a major vehicle for addressing those kinds of questions,” Harford said. Special Populations Networks are 18 grants the Institute recently awarded to community organizations to investigate scientific questions.
The new center would ask genuine research questions, Harford said at the working group meeting.
“We don’t know the answer as to why [disparities] occur,” Harford said. “Maybe when you do the research, the answer will be talking louder. I think the place where the argumentation breaks down a little bit is that we assume that we have all the answers and all we need to do is apply it.”
Translation of science into policy should not be trivialized, Harford said. To delve into this process, NCI is represented at the Institute of Medicine’s National Cancer Policy Board, a panel that examines such issues, he said.
“[The National Cancer Policy Board] was largely established realizing that there were things that NCI can’t solve that relate to policy,” Harford said. “But research can influence that policy.”
Even in situations where answers seem obvious, implementation is not, Harford said. “I’ll give you one example: We might conclude that minority youth are particularly susceptible to tobacco, and tobacco companies have been working hard on specific advertising to reach different ethnic groups with their product that kills,” Harford said.
“We also might do research that would conclude that if tobacco taxes were raised by X dollars a pack, that would have an impact on tobacco use in youth. NCI is positioned to do the research that would bring that information to the policymakers.
“We can’t raise tobacco taxes from within NCI, but we can do the research that relates to it,” Harford said.
At the meeting of the working group, Freeman appeared to be unaware of rules that govern the operations of federal advisory committees. “I will step out of my role here,” Freeman said at one point in the meeting. “I wear different hats. I am wearing my civilian hat now. So don’t put this in the minutes.”
Advisory committee meetings can be closed only when personnel issues, trade secrets, and matters of national security are discussed. Informed that minutes would be taken, Freeman said he would “speak wearing all hats.”
Several members of the working group asked Freeman to elaborate on his plans to influence policy and propel NCI outside its current mission.
“NCI does its work in biomedical research, training, and communications,” said Sandra Millon-Underwood, chairman of the working group and professor of nursing at University of Wisconsin at Milwaukee. “What kinds of questions do you hope to address within the center? What kinds of training activities, and what kinds on new vehicles for communications do you envision?”
FREEMAN: “I am not certain that I agree with you, first of all. What I said—and I could be wrong, too—is that, certainly, we have to do appropriate research to get to certain answers.
“Certainly, communication and training are very critical issues, and the training particularly of the workforce, of scientists and care givers, is a very critical set of issues. But I believe that these things—along with quality discussions in the scientific community—could hopefully bring the evidence to change policy in our country.
“It will not be the first time this has happened. The National Cancer Act did change the country—it changed the laws of the country, as a matter of fact. So I am not talking about reinventing the wheel.
“If this is such an important issue for our nation, I don’t believe we should limit it. Certainly, I believe that fundamental research must be done, and training must be done. But I don’t think we should stop there. I think that we must take position that we want to end up changing America.”
LUCILLE ADAMS-CAMPBELL, director of the Howard University Cancer Center: “You are talking about the applied aspect of this. Unless this center is going to have a different mission and focus, you always hear that NIH is only about the research. Does this center have a new focus? A new mission?”
FREEMAN: “That’s what I said. I don’t think my coming to this thing is about business as usual. I could stay in New York if that was the case. The research at NCI and NIH has some limitation, without a doubt. But it also could tailor its research activity with an end that is directed for bringing the evidence in such a way that policy is influenced.
“This is not a new method. The whole National Cancer Program came about because somebody like Mary Lasker brought this thing together and changed the way America dealt with cancer. I think there is a way you have to influence political change through evidence.
“We are an evidence-gathering body. But we could be tuned a little bit better as to how we bring evidence, and for what purpose. It’s not enough to be in a laboratory and do research, and say ‘Eureka,’ and then go on to the next question.
“That’s not enough for me. I am saying now, ‘Let’s do that research where you say Eureka, but also let’s do the research that is specifically oriented to asking similar questions from the research before that could lead to answers that could bring heavy evidence to policy makers in our country.’”
MILLON-UNDERWOOD: “Could you please give us a sense of the time you will be able to dedicate to the work as director of the center, and when we can reach you and where?”
FREEMAN (pointing to a cell phone on his belt): “You can always reach me. Always. You, especially.”
MILLON-UNDERWOOD: “What’s the number?”
FREEMAN: “With respect to my own time, part of it will be here in Washington, but I will also be working out of New York City.
“In fact, we are setting up a communications system in New York City, so I can work there at any time. I will have people who are full-time here, including a deputy director and other high level people in the organization who will be here all the time.
“How much exact time I will spend there, I can tell you that it will be more than is currently believed.
“I will be giving a lot of time to this, whether physically here or physically in New York, that’s a different issue, but in this time of computers and telecommunications, it doesn’t always matter that you are at a certain site.”
MOON CHEN, professor of health behavior and health promotion at Ohio State University: “How will your position on the President’s Cancer Panel complement your job as director of the center?”
FREEMAN: “I think the main thing about that is that I am the same person. I am assuming that the reason I was selected by Dr. Klausner to do this work was not unrelated to the work that I’ve done before.
“If you look at what the President’s Cancer Panel was actually doing during my nine years, you will see that these activities are very symbiotic. By virtue of this point, this is who I am.
“You could say I am wearing one hat or another. But, in a way, I believe that it may be very helpful for this to be the same person. I am conducting now regional hearings asking the fundamental question: Why doesn’t everyone in America get good cancer care?
“So that’s a disparities issue fundamentally…Through this peculiar set of personal events for me led me to different titles, different jobs. Through it all, I am the same person.
“I believe that the combination of being the chairman of the President’s Cancer Panel, with my perspective, and being the director of the center will be a very comfortable combination.”
