Consortium cancer centers have been around for 50 years—since the signing of the National Cancer Act of 1971

The consortium model has generated a lot of interest in recent years , in part because technology is making it easier to do science and run institutions across long distances (The Cancer Letter, April 19, 2013; May 10, July 12, 2019; July 2, 2020).

NCI’s attitude toward consortia has varied over the years, with changes largely following the contours of development of the science of cancer control, said Robert C. Young, who has observed consortium cancer centers from multiple vantage points: as associate director of the NCI Centers and Community Oncology Program, as president and CEO of Fox Chase Cancer Center (which started out as a consortium), as chairman of the External Advisory Board of Dana Farber/Harvard Cancer Center, and as chairman of the NCI Board of Scientific Advisors.

After NCA was enacted, several institutions formed consortia, leveraging their resources. 

“Most of the small cancer centers at the time were basic science-oriented, and they really didn’t have cancer control programs,” Young said to The Cancer Letter. “And so, there was a lot of discussion about, well, how could you create these outreach cancer control programs? And so, a lot of squirreling around was done to try to create mechanisms by which you could bring in community-based activities and community-based, so-called cancer control.

“Actually, what happened is that cancer control and prevention became a real science, and scientists based in cancer centers became the drivers of cancer control.

“But that was 20 years after the fact. Early on, there weren’t such people in the centers. So, there was a great deal of interest in creating these things, like the Northern California Cancer Center, and the Illinois Cancer Control group, bringing together consortiums of people to facilitate the cancer control research effort,” Young said.

Consortia were controversial from the start, and by mid-1980s, several had either dissolved because of the lack of resources or lost NCI designations after failing to withstand peer review by NCI. 

The NCI designation rules were tightened at that time, and institutions that were considering the consortium cancer center model were being discouraged from doing so by NCI officials. 

This changed in the late 1990s, when NCI came out in opposition to creating multiple cancer centers in Boston. At the same time, in Seattle, Robert Day, director of the Hutch from 1981 to 1997, was waging local political battles to create a consortium cancer center in Seattle. 

A package of stories on the Seattle consortium was published in last week’s issue (The Cancer Letter, July 16, 2021).

A video of their conversation appears above.

Young spoke with Paul Goldberg, editor and publisher of The Cancer Letter.

Paul Goldberg: Thank you for agreeing to talk with me. I was working on a story about that 20th anniversary of the Seattle Cancer Care Alliance, and I realized that there were so many changes of thought about consortium cancer centers through NCI history, really 50 years’ worth of that, that it would be really interesting to reconstruct how all of that worked. And there’s really only one person who can do this.

Robert Young: Well, I don’t know about that. There’re probably a number.

You totally can, because you were in the center of it all from the beginning, really. How do you want to start? Start in 1971?

RY: Yes. It’s interesting to go back and look at some of the documents. I had an occasion a while ago to look at Benno Schmidt’s, June 12, 1974, President’s Cancer Panel report. I got it online, so I’m sure you can.

It’s interesting, because he really does spell out what Mary Lasker and the framers of the [National] Cancer Act really had in mind in terms of what they wanted to accomplish. And a lot of it was basic science oriented. It’s amazing reading Benno Schmidt’s words, how much it’s focused on basic science and how the delivery of cancer care is not specifically the role of cancer centers.

And so, you can see how the system developed as a result of the messages that were received.

Now, at the time, people were trying to follow the National Cancer Act. It’s an interesting document, because it basically says, [Frank] Rauscher ought be able to do whatever he wants to do. And, of course, as soon as that happened, the OMB said, “Well, not so fast. We don’t have the money to do that. Furthermore, we’re not going to give you the money to do it.”

So, there was a lot of back and forth about the number of cancer centers, the number of comprehensive cancer centers and all this sort of stuff.

And superimposed upon that, there were the issues of money. Surprise, surprise!

But in fact, in the early days, the cancer grants were a major source of funding for cancer centers. And it didn’t take long before it became just holy water. Nowadays, it’s such a small part of the cancer center’s budget as to be almost not measurable.

It’s basically a license to use the NCI’s blessing to go out and raise money, and it’s been successful that way. There was all this talk about, “Well, we got to be much more comprehensive. We got to be like some of the comprehensive cancer centers.”

And, of course, most of the small cancer centers at the time were basic science-oriented, and they really didn’t have cancer control programs.

And so, there was a lot of discussion about, well, how could you create these outreach cancer control programs? And so, a lot of squirreling around was done to try to create mechanisms by which you could bring in community-based activities and community-based, so-called cancer control.

Actually, what happened is that cancer control and prevention became a real science, and scientists based in cancer centers became the drivers of cancer control.

But that was 20 years after the fact. Early on, there weren’t such people in the centers. So, there was a great deal of interest in creating these things, like the Northern California Cancer Center, and the Illinois Cancer Control group, bringing together consortiums of people to facilitate the cancer control research effort.

Also Fox Chase; right?

RY: Yes. For the most part, it really didn’t work very much. It really didn’t work very much, because, in fact, it was not science-driven, it was organizationally driven. And they set up all these things, and people were saying, “Well, I’m going to talk to the American Cancer Society, and I’m going to the Public Health Service, the local health control officers and so forth.”

And those groups were not really interested in doing the kind of cancer control that the cancer centers were talking about.

They were talking about, how do we get a real science-based cancer control effort in place? And what happened is, it had to slowly grow up on its own. That is, we had to have groups of people who entered the cancer center structure: epidemiologists, cancer control research people, cancer prevention scientists, and they went out and actually created the science-based relationships with the community that actually, ultimately, proved successful.

So we are really not talking about money here, we’re talking about cancer control.

RY: Except in the very early years, where there was some serious money relative to the needs of the cancer center, money has never been the driving force of expanding this. That’s a myth. Even in the days when Fox Chase had a big cancer center grant, it was 5% of our budget, and now, I’m on still on two cancer advisory boards, and their percent of the budget is less than 1%.

I was thinking more about starting, getting started, that kind of money—seed money.

RY: Well, I mean, there was seed money early on, and it was used in a whole variety of ways to produce consortium cancer centers. For the most part, it didn’t work very well. I mean, if you look at the consortium cancer centers like, Colorado, like Northern California, like the Illinois one, they ultimately just imploded, or they evolved in a different way. They became more cancer center-focused and science-driven.

[b]So, we’re talking about the first generation now. So, then comes a time when you were actually running the program during the rewrite of the designation criteria in 1985. Can you walk me through the politics? [/b]

[b]I’m looking at the old Cancer Letters. I was still a general assignment reporter in 1985—elsewhere.[/b]

RY: It became a problem of, again, money for getting these things started. That is, there weren’t a lot of scientists already in these cancer centers and the cancer centers said, “Well, we would be happy to stimulate this, to work on it, to expand the research in this area, but we don’t have any money to do that.”

The cancer centers program said, “Well, we don’t have any new money, and we don’t want to shrink your grant to shunt money from one place to another.” And so they said, “Well, you can’t just keep asking us for more and more unfunded mandates.”

And, of course, that’s been one of the siren calls of the cancer centers program since it was founded, just because the Cancer Institute is always coming up with great new ideas that they wish cancer centers to do without funding.

But that was when they phased out a lot of the consortium centers, or did they just die on their own?

RY: I think for the most part, they died on their own. I think that there was a general lack of great satisfaction with what they’d been able to accomplish scientifically. There was a lot of people setting up meetings with community-based institutions and so forth, but you couldn’t really measure very much in terms of what real impact occurred as a result of that.

So, it was happening on its own.

RY: Yeah, I think so. The other thing, of course, is that these programs, at least early on, fared very poorly in peer review. Scientists came into review them and said, “Well, there isn’t any science here. There’s lots of meetings, people are doing all sorts of things, and they are talking to people in the community and so forth, and all that’s laudable, but it’s not science.” And so it really didn’t fare very well when it got reviewed in peer review.

And again, what the problem was the lack of science-based cancer control in the cancer centers, because there just weren’t that kind of science being done. Now it is, and now you can get peer review groups that are really very knowledgeable and say, “Look, I can give you examples of how to do this. Here’s a cancer center that’s doing it.” But that wasn’t the case back in 1985. There just weren’t a lot of actual science-based cancer control programs out there. The strongest cancer control stuff was epidemiology at that point.

So then, 1985, the new guidelines emerge… Would it be helpful to go through the list of the consortia that we know of, that we can still remember? There’s the Illinois Cancer Council. They died because they ran out of state money. Right?

RY: Well, yeah. I mean that’s that’s what was said, and that’s a problem. The problem with state money, in general, until recently, has been that it depended upon the attitude of the governor of the state at the time. At that time, this was all fledgling stuff.

Now, most of the major cancer centers in states have essentially a line-item, a multi-million dollar line-item in state budgets. And these are very well-defended within the state legislatures, because these are bragging rights. But that wasn’t the case when these things were fledgling programs. States didn’t see that they were doing very much.

The other thing is that cancer centers back early on were fighting their way up into the academic ladder within their universities.

There were a lot of people in universities who didn’t like the idea that there were cancer centers, that they had independent leadership roles at the level of the chairmans of departments and so forth. There was not a widespread acceptance of cancer centers as a mainstream part of academic medicine.

Northern California fell apart, too, but I think there were two different organizations involved, and one was academic, and the other was more of a business organization.

RY: Well, that’s the problem. And again, I don’t want to be super critical of what was done back then, simply because people were experimenting with different models to see whether or not they could get something that would actually accomplish the goal, which was to link in some productive way, cancer centers with the communities in which they existed.

Now, if you go back and look at the original intent of the Cancer Act, it was primarily to create cancer research.

Any community relationship was deemed to be fine, but it was just gravy, in the sense that that wasn’t the central mission.

That changed, as well it should. I think that there’s much more, now, focus on what impact does the presence of the cancer center now make in the disease, cancer, within your catchment area or within your state, or whatever. You really need to make a difference. And it can’t just be from the publications in Cell or New England Journal. You have to make an impact in your community, and that’s a healthy evolution as far as I’m concerned.

Oh, we can get to outreach and engagement, too, in a little bit, but that’s later. Let’s stay in that mid-’80s for a few more moments. So, you’re really saying that what you’re dealing with there in the first phase is more of a dying out of the herd of natural causes, as opposed to being culled by NCI.

RY: Yeah, I think that’s true. I mean, I think for the most part, they just weren’t very successful on the ground, in the places where they tried them. At the same time, there was not very much classic peer review support for those kinds of mechanisms.

They did not fare very well in review. So, that was an additional issue that they faced. And the Cancer Institute was, in a sense, agnostic about whether or not any particular experiment would work or not work. They tried things and they worked, they continued to use them. If they didn’t work, they just let them go.

Okay, so 1985, there’s not much going on after that, I guess?

There is an attempt made by Louis Sullivan to create a cancer center consortium of Meharry, Howard and Drew. That just didn’t get off the ground, right?

RY: Yes, I think that’s right. I mean, obviously, I think that there was a great deal of interest in trying to expand cancer research related to minorities.

And so, that there was a good deal of initial enthusiasm for this idea, “Let’s see if we can invest something here and make it evolve into something important.”

I think that the desire was justifiable, but in the long run, I just don’t think there was enough science-based activities at the time, and enough interaction within the scientists at that particular time to make it work.

And then, of course, Fox Chase, what happened there? Because I know that the original Fox Chase was a consortium with Penn, I believe.

RY: Well, yeah, it’s interesting. I mean, at the time that was created, both institutions had about $5 million in grant funding. They were equal size, and the director of the Fox Chase Cancer Center was Tim Talbot, the director of the Penn Cancer Center was Peter Nowell, and Peter Nowell worked with [David] Hungerford in identifying the Philadelphia chromosome.

So, there was a scientific interaction between the two institutions. They knew each other well, they had worked together in scientific issues, and so they said, “Well, we’ll just do it that way.”

And there was a good deal of flexibility at the time about what was acceptable and what isn’t as a collaboration. And it worked reasonably well, but the two institutions grew. And when I went to Fox Chase, the first grant I put in, we applied for comprehensive cancer center status and got it.

There wasn’t any real big, ongoing relationship. Penn loved the idea of being able to call Barry Blumberg, the Nobel laureate, a member of their faculty and things like that. But it never was a big institutional collaboration in a major scientific way.

There were individual collaborations. Still are, for that matter, but it was more a practical way of responding to the Cancer Institute’s desire to have comprehensiveness at the time.

They’ve gone back and forth about how much they want to have comprehensiveness, which is funny, because there’s no money in it. You don’t get money for being a comprehensive cancer center.

And so, you can use that again for bragging rights, and you can go in and raise money from your community and from your state and from things like that. I mean, cancer center directors will die to get comprehensiveness, but there’s no money in it.

There’s external money, and bragging rights, and all sorts of things, but there’s no money from the Cancer Institute for it.

It’s a good use of government money, because you’re leveraging resources.

RY: Oh, absolutely. Oh, absolutely.


RY: Yes.

And the political support for research, that’s also great. So back in 1985-ish, from that point on, as these consortia are dying out, NCI is telling people, “Hey, don’t bother submitting for a consortium grant, because won’t approve it.” I think that’s what Paul Calabresi must have told me around 1990-something, [maybe] 1995. He was told not to bother.

RY: As I say, whenever somebody proposed a consortium cancer center, it had to get peer review. And peer review, just really, they fared very poorly in peer review. Lots of things fare poorly in peer review. Peer review is a very narrow microscope in many ways, and it is not particularly flexible. And as a result, they just fared very badly whenever they were reviewed by peer review groups.

So, nothing happens for 15 years or so, right? They just strangling all attempts to set up the [consortia]…

RY: Well, at least from my vantage point, a lot happened in those 15 years, which had nothing to do with this. It had to do with the emergence of serious cancer prevention and control research, not just in a few institutions, but in a lot of them. And they were churning out people who could then compete effectively in the NCI peer review system for serious grant money.

I mean one of the amazing things early on, if you had scientists who were skilled in peer review, or skilled in cancer control, you did extremely well. Paul Engstrom’s program at Fox Chase, almost all of his investigators had peer reviewed funding, and a lot of their salaries on peer reviewed funding.

Much better than the basic science group or the clinical investigations groups, just simply because there weren’t that many people out there competing for these grants.

But that changed dramatically in those 15 years.

Indeed, a lot happens. We’re now around year 2000, really, no, about 1998-ish, right when the Harvard is trying to set up, Dana-Farber actually is trying to its own cancer center.

And so is Seattle, Washington, and so forth. And as you were saying, Bob Day is a cancer prevention control guy. And then Rick Klausner says… Well, you go… You understand this better than I do…

RY: My impression at the time, because I talked to Rick about it, was that he just said, “We could have 17 cancer centers in Boston if we tried, and we’re not going to have it.” And so, he just said, “It’s not going to happen. You guys are going to have to get together and work together,” which was a miracle.

It was a good move, actually, because it turned out that it worked, despite the fact that those guys compete rigorously with each other scientifically, they actually managed to come together and build a very, very strong cancer research program that was reasonably well-integrated.

And it’s become a very impressive cancer center with serious participation with scientists in the institutions that wouldn’t ordinarily not work together at all. It was a good move on his part. I think it was just his own strong feeling that he wasn’t going to have to stand up and defend seven cancer centers in Boston.

Also, when you think back to this, there was another previous consortium cancer center in Boston, the Harvard Dana-Farber that, I think, just either died on its own or fell apart in some other ways. Is that correct?

RY: There’ve always been a significant number of Harvard faculty that have been a part of that cancer center. It’s not just MGH guys and Dana-Farber guys. There’ve always been a lot of classical Harvard University investigators interested in cancer research.

I’m talking about consortia, formally organized consortium. There was one before that didn’t make it. Is that correct or am I…

RY: I don’t actually know whether there was. It wouldn’t surprise me if there was that it didn’t work. The way it basically works now, and the way it’s worked since they founded it, is that everybody who happens to be interested scientifically in it, and wants to participate, can do that, but it’s on a scientific basis, not on a institutional basis. The institutions up there don’t play well together.

What about Seattle? Bob Day told me the story, many times, I think he’s sworn me to secrecy about his battles to get [a consortium] going. And you know the stuff, you haven’t been sworn to secrecy by Bob Day, so maybe you could tell me what happened in Seattle.

RY: In many ways, Bob was ahead of his time, because he was somebody who really was deeply interested in the science of cancer prevention and control, and he wanted to see that be amalgamated into these cancer centers.

And so, what he wanted to do, was to try to build an example of that in Seattle by bringing in a number of institutions, to have more in the way of cancer control outreach. But he was swimming against the current at the time.

He actually got there. He got it done.

RY: Well, he did. Yeah, yeah.

So, 15 years after the massacre of 1985, he brings back this whole thing of, and well, with Rick Klausner’s support-

RY: Yes.

Well, what was Rick’s thinking about Seattle? Do you know?

RY: That I don’t know. I don’t know. I never talked to him about that specifically, so I don’t know whether he had a… I knew about his very specific attitude toward the Dana-Farber program, but I never talked to him specifically about the Seattle one.

So, what happens next? There are a few consortia, there aren’t that many, really. So, it’s 20 years go by, well, really, about 10 to 15, and then there’s the consortium model changes a little bit. Science changes, too. How does that work now? I’m thinking Georgetown-Hackensack, for example.

RY: Well, I don’t know. One of the things that’s happened is that the consortiums that are being proposed now, for the most part, are between established institutions that have real science and have real research investigations ongoing.

They’re not paper relationships that build in a hope that, if we get together, something good will come of it. And so, I think that’s one of the big differences, that, to my knowledge, at least, no one is proposing a consortium relationship in which you don’t have real science going on in the two institutions, and they don’t see ways that they can leverage each other’s scientific expertise in productive ways. So, I just think we’ve grown into a different situation than we were in in the early days.

And then, also, it’s fascinating to see how the catchment area also changes with that, when you can actually combine areas from a few states apart, if you wanted to. You can, or you can even probably go across oceans if you wanted to.

RY: Again, I think what would happen in all those situations now, is that they would end up being subjected to peer review, and the peer review investigators would say, “Okay, show me the science, show me what real research is going on in this relationship. I’m not just interested in having two institutions add up their grants and put them together and say we’re bigger and better.”

One of the things that peer reviewers look for, as soon as they get into one of these situations, is show me evidence that there’s really a collaboration that’s producing significant science.

And you have to live up to the five and seven rule, right?

RY: Yes.

Which certainly weeds out a lot of players, potentially. It’s really fascinating. So, what is the future of the consortium model now? What do you think?

RY: Well, I think we’ll always have unique situations where collaborations with two institutions will be real and successful. I think that they are always more difficult than either the two participants think they are going to be.

Institutions have different cultures, and even though they think there are good reasons on paper to get together, getting together is not simple. And in my view, most of the time, the ones that work are the ones where the relationship comes together from the bottom up, not from the top down, and where collaborations developed between scientists at the two institutions, and that’s what actually produces the collaboration.

Give you an example. One of the cancer centers that I followed with great interest is the University of Oklahoma. And Oklahoma has one of the biggest Indian populations of any state in the country.

And, of course, one of the things that the cancer center has always tried to stimulate is programs that are unique and represent an inroad into trying to produce cancer-related science relevant to unique populations in the country, minority populations, Indian populations… well, whatever. They have done it in a very interesting way. They have done it through scientists, some of whom were actually Indians, MDs, there are PhDs who happen to be part of Indian tribes.

And the relationship between the Indian tribes and the cancer center have developed as a result of scientific interactions. And so they have started that way and grown up into institutional relationships. They now have institutional relationships with most of the big Indian populations across the state.

But that was done not first, it was done after the scientific interactions, and after people began to know each other on a first-name basis before the institutions got together. And I think the bottom-up relationships that are science driven are the ones that work.

I think this is also getting us away from the subject of consortium cancer centers, but one of the things that I don’t think Doug Lowy is getting enough credit for is, that he did require outreach and engagement component on the cancer center grant.

RY: No, I think that’s true. I think that’s true. You could push, to a certain extent. And, of course, I think institutions, mostly cancer centers, are now in a much better position to be able to respond to the Cancer Institute’s push than they were in the past. They’ve got manpower, they’ve got scientists interested in outreach programs, and they have more of the capacity.

I mean, in the early days, responding to unfunded mandates was really hard, because you just didn’t have any money. And now, cancer centers have got a lot of money coming from a lot of different non-NCI sources, that they can actually put their own money into some of these outreach programs, and build them, significantly, in a way that they couldn’t 20 years ago.

So, it all comes down to science, that’s what I’m hearing you say-

RY: That’s my own personal belief. I think that’s what’s caused the ones that work, to work, and it’s what causes the ones that didn’t work, to fail. At least that’s my view. Rick Klausner just forced Dana-Farber and MGH to work together, and said, “Look, there’s not going to be but one cancer center, so you guys work it out. I don’t care, but there’s only going to be one.” Well, they worked it out, and it works. And there’s scientific interaction as well as scientific competition, but it works.

One in Seattle.

RY: Yeah, yeah. Exactly.

Bob Day did win.

RY: Yes, he did. And it’s a good thing. Because it’s been hard, I think, to reach a critical mass of understanding about the importance of cancer prevention and control in cancer centers. It just wasn’t that simple early on.

Is there anything we forgot?

RY: I don’t think so. Not that I know of. I mean, there all sorts of interesting things about the evolution of cancer centers, and we can talk about a whole host of things. I think the issues you were interested in getting at…

And in a simple sense, the Cancer Institute, I think, would take the position that it has peer reviewed any concept that’s developed out of the Cancer Centers Program. And if it passes peer review, then it gets funded, and if it doesn’t, it fades away.

That’s fascinating. This was really panoramic, Bob. Thank you so much.

RY: Well, it’s quite all right. I hope it was helpful and shed a little light on the issue. But go back and look at Benno Schmidt’s first report. One of the things that disappeared very rapidly after the National Cancer Act was this idea that the President’s Cancer Panel, this three-person panel, that was supposed to directly report to the President about what was going on.

That may still exist, but in fact, it never worked past Benno Schmidt. But at the time of Benno Schmidt, he did have access to the president, and he was a very, very smart man who had a very clear vision about what he wanted to accomplish and what he wanted the cancer centers new program to accomplish.

And it succeeded.