The National Comprehensive Cancer Network, an organization that promulgates guidelines based on standards of care provided at academic institutions in the U.S., is indisputably one of the pillars of oncology today.

A quarter-century ago, NCCN was a startup dependent on cooperation between 13 elite institutions that were more comfortable competing with each other (The Cancer Letter, March 15, 1996).

“One of the things that I would always say about the NCCN is that the NCCN has been much more successful than anybody ever imagined when they sat down and started it,” said Robert C. Young, founding vice chairman of the NCCN board and former president of Fox Chase Cancer Center.

“And I think the reason for that is that they’ve been willing to change their focus, and grow with their focus, and change the format and keep what works, and abandon what doesn’t. They’ve been able to evolve and successfully, and the whole basket of things that they do now is very different from what it started as, and many of the things were not envisioned at the time at all.

“And that’s the mark, I think, of a successful organization of any kind.”

Over the next two weeks, Cancer History Project will publish interviews with:

  • William T. McGivney, CEO from 1997 to 2012,
  • Robert W. Carlson, CEO since 2013.

The first story in the four-part series appeared last week (The Cancer Letter, March 5, 2021).

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

Paul Goldberg: Thank you for agreeing to talk with me about this. What I wanted to do is focus on the beginning of NCCN—the conversations that take place before the first meeting, all of the conversations involving you and Joe Simone and others. And then, maybe go through the first meeting, and then leave it at that, because this is a lot of stuff to cover. So, what happens before? What are the first thoughts? Why are you doing this?

Robert C. Young: Actually, interestingly enough, back in 1995 or so, when we began to talk about this, a handful of us chatted about it because of the Clinton health care plan.

And it was apparent that they were taking note of the fact that there were huge differences in the health care costs, depending upon the institutions that you went to.

And they raised a perfectly reasonable point, and that is, “What is the evidence that we should be paying more for these institutions than we paid for others?”

And all of us knew that for a variety of reasons, which you know obviously, the research enterprise, a whole host of things, that we were higher-healthcare-cost institutions. And so, there had been a group of the administrators of the freestanding cancer centers that had been meeting from time to time, really to share best practices more than anything else.

So, there was some interaction between the freestanding cancer centers, but there had been no formal interaction, we knew each other, but there wasn’t any formal interaction between the leaders of freestanding cancer centers, and so we thought we should get together and talk about this issue, which is how it really began.

And so, it seemed clear at that first meeting that clearly some mechanism for demonstrating quality needed to exist, and it needed to exist in order for us to compete in this new era. And so, we began to set up this group, this NCCN. We talked about how one could go about measuring quality, and finally decided that the first step is, we had to define what state-of-the-art quality was.

And so, we thought about generating guidelines, which were in essence, an expression of what constituted state-of-the-art care. That’s what we did, and we set it up when we had an organization and we decided how we were going to do state-of-the-art care definitions.

And just about this time, the Clinton health care plan went up in a puff of political smoke. And so, we thought about it and said, “All the reasons that we formed this organization still exists, and so, we should go right on and do what we were going to do in the first place.”

PG: Yeah. If we could just add a little granularity here, because there were three goals here, if I remember this correctly, I was covering it at the time.

One goal was to contract nationally with the big buyers of health care, like Ford and so forth. The second goal was guidelines, and they were there from the beginning as a goal. And the third goal was to show that cancer centers provide better value care, or similar value care-

RCY: Or better outcomes.

PG: … or better outcomes. Well, I think, yes, better outcomes than community hospitals.

RCY: Right.

PG: So, the first point of it, I think, that was when… the first guy to run it was Michael Goldberg, who is not a cousin. And you were there for that as well; right? For that phase, how did that play out?

RCY: Yes. Well, I think those are the three basic goals that we had.

It seemed clear after the failure of the health care plan that the direct contracting would not be as necessary, certainly we didn’t abandon that goal, and explored it. The guidelines things, obviously we were committed to. And the outcomes piece was something that we ultimately wanted to do.

We actually explored that over a period of time. It took us a while to get the guidelines in place and then we thought, well, once we get the guidelines in place, we will define whether or not we actually followed our own guidelines, which seems absurd, but because doctors are doctors, it’s not so absurd. And finally, If in fact we followed the guidelines, did we have better outcomes?

And so, just to finish that piece of it, we did get so far as to create some large databases on breast cancer and non-Hodgkin’s lymphoma. And we demonstrated, I think, to our satisfaction at least, that our institutions, for the most part, followed the guidelines probably about 93%, as I recall, for multiple institutions, in fact, followed our own guidelines.

And then, when we began to think about how we could demonstrate true outcome benefits over and above other settings, the mechanics of that just became impossible. It cost us an enormous amount of money just to do matching guidelines for breast cancer and non-Hodgkin’s lymphoma.

So, that whole thing became less a focus of the organization, and we began to crystallize around the issue of guidelines.

We did something with guidelines that a lot of people have not done. And I personally continue to think that we have the right way to approach it and others feel very much differently.

We decided at the outset that the criteria for state-of-the-art care was so flexible in oncology, and that the information available to assess guidelines was so variable that the notion of fixating on randomized trials with survival outcomes was true in a few diseases, but it would never be true in the vast majority.

So, we decided that what we should do is essentially rely on experts and to utilize all of the data that people felt was relevant.

We set up the groups; large groups of experts in every field of oncology, and we decided that we would do them on a rotational basis, and unlike everybody else’s guidelines, we would update them all the time. And those things, I think, have proven to be enormously important in the success of NCCN guidelines.

Yes, they are based on all the best trials that are available. They are also based on the basis of the best judgment on the part of the physicians involved and the experts involved.

The groups that review these are big enough so that it’s very hard for some very opinionated thought leader to dominate the conversation. And so, we update the guidelines all the time, and that makes our guidelines different from everybody else’s.

PG: Also at that time, the compendia, I think two compendia fell apart.

RCY: Yes.

PG: So, you had an opportunity to put together a compendium and that was-

RCY: Yeah, that came after the decision about… that was in Bill McGivney’s era, that was something that he developed and it became quite successful as well.

PG: Getting back somewhere again to the creation, the first person that’s wrapped around that is Michael Goldberg who of course is an entrepreneur who also has some conflicts. I don’t remember, do you remember the conflicts? I know he was building a group of community practices that they were buying…

RCY: Yeah. It just wasn’t the right chemistry. His whole approach was, I think as you point out, entrepreneurial rather than academic, and I think that we were looking for a leadership that was more in tune with what we thought we could do and what we wanted to do. And then, I think that was followed shortly after by Bruce Ross for a period of time.

And Bruce had retired from Bristol-

PG: Let’s stay on Bruce, because Bruce is forgotten, basically, in the field. And he is crucial to this field. He certainly is crucial to my career. Bruce has mentored more people than pretty much anybody in this field.

RCY: Yeah. I didn’t know your connection with Bruce, but I feel almost the same way, a remarkable guy. And when we were looking for somebody who could… because he knew all of us, because he’d worked with all of the institutions, this was the time when Bristol actually had all the oncology drugs, so everybody in the world knew Bruce, and he knew everybody who was anybody—and genuinely nice man.

And so, we were chatting with him, and he said, “Well, I can do it for a while, I’m not doing anything…” I don’t think he ever…, nor did we ever think it was going be a long-term permanent position. But when he took it, he said, “Well, we’ll set it up in Philadelphia near Fox Chase.” And he knew us well and we knew him well.

PG: Well, he was also with your board at Fox Chase; right? He stayed on the board after leaving Bristol, he left all over a channel-stuffing, pretty mild case of channel-stuffing… compared to what happened later. And then he stays on, you ask him to stay on at Fox Chase board, and then you bring him into this… but he was also a friend of Joe Simone’s, of course, and everybody else’s, and he understood the structures, which is fascinating. So, he’s like the perfect guy for this, it seems.

RCY: Yeah. Well, I think he had obviously good administrative skills, he knew everybody, he was, I think, respected by everybody, and he respected the players that were involved—he was a very good choice for this period of time.

But as I said, he never approached it as something that he was going to do on a long-term basis, and we knew he wouldn’t, but we needed somebody. We were comfortable with him, he was comfortable with us. And it was a very successful, albeit relatively short a period of time.

PG: But there’s this one moment, the first meeting of NCCN which was in, I want to say Tampa, it was definitely Florida, was it Tampa? Yeah, it was Tampa. [Editor’s note: It was Ft. Lauderdale.]

RCY: Well, it can be. I recall the first meetings mostly being at Memorial, now that may have been earlier, I think you’re correct that the first formal meeting of the NCCN group after we had formed it, was he in Tampa. But I think that the initial discussion meetings were at Memorial.

PG: Yeah, of course, because the smoke-filled rooms were there, but once people were allowed, they had… yes. But Bruce was telling me about the smoke-filled rooms, and you were, and Joe was, so I might as well have been there, but-

RCY: Well, the first groups were the usual suspects. We had Memorial, we had Sloan Kettering, we had Fox Chase and we had Roswell Park.

PG: Right.

RCY: And we were sort of all up in the Northeast, and it was easy to start there. And we really didn’t bring in the others until a couple of meetings, but…

PG: But then the meeting takes place, the first public meeting. And then you remember… the story, I remember two things in that meeting, one of them was talking with Jane Weeks, which was absolutely hilarious, because she was just… we had this sort of a juvenile delinquent corner there, standing there and talking trash. It was just totally great.

Most of what we were talking to you about was this coup by the transplanters—can we talk about that? Because that’s where Bob Carlson really saved the place, it could have really-

RCY: Oh yeah. This was the breast cancer issue, yeah.

Well, I think it was very important in defining, I think, the stature and credibility of the guidelines process. And maybe other areas would have done it, but this was the first and biggest, and most visual of the ones that we did. And basically, he took the position, as you would expect.

Everybody and his brother were doing transplants for solid tumors, and there were believers and non-believers, and it came to a head over the breast cancer guidelines and whether they would accept bone marrow transplant as a proven, credible approach to management.

And Bob took a very hard line about it, and was very articulate in defining the reasons why he said it was not state-of-the-art care and shouldn’t be recognized as such in the guidelines, and he finally proved to be successful in the arguments, and the group never did include bone marrow transplantation in the guidelines as an accepted state-of-the-art care.

And I think that defined the behavior of the guidelines panels going forward. And I think, on balance, they’ve done a very good job.

PG: This is something that happened behind closed doors. I wasn’t there in those meetings were you were at that meeting? I was just curious if-

RCY: I was at the meeting, I wasn’t in the breast cancer guidelines discussion, so… yeah.

PG: Yeah. So, you weren’t there, but with… so you’ve heard what I’ve heard?

RCY: Yes.

PG: People were talking about it all through, about how the transplanters were defeated, how Bob Carlson fought back. But he really did save the place by doing this, because-

RCY: Well, I’m not sure I would go quite that far, in the sense that there could have been other examples, there’ve been all sorts of examples of controversial areas in oncology care that could have bubbled to the top and done it.

But this was the first one, and this one was decided the correct way, and so I think in that sense, he did save the integrity of the guidelines.

PG: Right. Yes, that’s really what I was saying, because had have they prevailed, that would have been very unpleasant. I have another couple of questions, is there anything else that we’ve… any thoughts, any memories of this whole process? That-

RCY: Well, there are a number of interesting ones, I think, and one of them is that you focused on the first meeting… we expected the first meeting to be quite successful, because we had developed guidelines in a substantial and maybe 50% of all the cancers at that point.

We knew that people would want to hear about those guidelines. We knew that industry would want to hear whether they were included or not. And so, the first meeting was a big success.

And so, Bill McGivney at the time said, “Well, we got a plan for the next meeting,” and that was a very hotly discussed issue at the time, because many of us, including me, unfortunately, I have to admit, felt that since we had already decided, a fairly controversial thing at the time, that we were going to do all these guidelines development and then we were going to give them away.

And we had a hot debate in the board of directors about that as well, because that was all we had at the time. And so, we decided we were going to do that, the executive committee kept saying, “Well, if we give away all our guidelines for free, and they have access to them, why would anybody ever go to the next meeting?”

And Bill said, “Oh, don’t worry, people will want to come in.” So, we set it up for the next year, and sure enough, and the rest is history, because every year people continue to come.

We did give guidelines away to a certain extent, but we also said for those people who can pay for it, like pharma and organizations and healthcare systems and so forth, they got to pay. And he said correctly, “If we produce state-of-the-art guidelines, they will, in fact pay for them,” and, in fact they do. So, that was a success.

The other thing that, I think, was an important issue was the issue of the firewall. These discussions occurred very early in the organization, because we were well aware with how much at that time oncology was in bed with pharma, freestanding cancer centers and cancer centers were in bed with pharma in the sense that all of their non-research money and non-healthcare money essentially was coming from pharma.

And so, we felt that unless we produce some sort of firewall in our system, that that insulated pharma money from the development of the guidelines, it would never be credible. And so, that’s what we set up. It was set up early and it’s still in existence that all the money for the development of guidelines, all the committees, all the travel, all that stuff, that all comes from dues, from institutional dues.

And that the money that we get from pharma comes for three sources, one for scholarships for investigators on a competitive basis. Two, educational programs that we propose and people sign up for and come to.

And the challenge, of course, and this has influenced the growth of the organization, is that because dues are what pays for all of this and those expenses go up, there has been an interesting evolution in the organization of opening its doors to more and more cancer centers across the country, just because there was a straightforward need for money.

That was not the case in early years.

It was geographical distribution and bringing something unique to the organization that it didn’t have already. But that was tested, of course, because Sen. [Chuck] Grassley [(R-IA)] wrote to the NCCN, I can’t give you the year, but-

PG: Don’t worry. [The Cancer Letter, Nov. 13, 2009]

RCY: Okay. And said, “This looks very suspicious to me, tell me what you guys do.” And we wrote back and told him what we did, this was in the early years of Bob Carlson, we wrote back and he said, “Yep, that sounds fine to me.”

PG: Looking back, what 25 years, tell me if I’m wrong, if I were to look back at what was accomplished here, one, the most important thing, I think might be that 25 years ago, if somebody had [ovarian] cancer, they went to see Bob Young at Fox Chase. Or breast cancer went to see Bob Carlson. But now, it’s more systematized, as a result of NCCN in part, that to me would probably be the main thing.

RCY: I think that’s right. I think one of the realities about doctors is that, doctors think they know everything, they act like they know everything, but they know that they don’t know everything.

And they’re actually very data-oriented, and if they don’t have any data, then they just wing it, and they always think they are right. If there is data, or if there are standards that are available, they try their best to get there or get close to it.

And I think that’s what it’s done, and it’s been able to generalize this information so that the standards, albeit perhaps they’re not perfect, but they’re better than most, those are widely available, so people can, in fact, measure their practice against the standard, and as a consequence of that, the quality of oncology care gets better as a result.

PG: And anything we forgot? Anything…

RCY: I don’t think so.

One of the things that I would always say about the NCCN is that the NCCN has been much more successful than anybody ever imagined when they sat down and started it.

And I think the reason for that is that they’ve been willing to change their focus, and grow with their focus, and change the format and keep what works, and abandon what doesn’t. They’ve been able to evolve and successfully, and the whole basket of things that they do now is very different from what it started as, and many of the things were not envisioned at the time at all.

And that’s the mark, I think, of a successful organization of any kind.

PG: It’s almost like it followed a third, really, of its prospective design… as what got implemented-

RCY: Yes, that’s right. The contracting thing, and it’s interesting, because the whole area of contracting for care has been explored by a lot of people.

I note the failure of the big collaboration between Berkshire Hathaway and two other institutions, they were trying to build a healthcare system that delivered for their corporations, and it just didn’t work, it’s a tough thing to try to do.

And I think everybody would still love to be able to do what we set out to do, and that is to actually show that if you utilize the guidelines, that results in better care and better outcomes.

All of us believe that’s true, just like clean air is better than dirty air, but you have to be candid and say, “We’ve never been able to demonstrate that,” not because we’ve tried and failed, but because trying to figure out how to do it and do it within some reasonable budget is just really very difficult.

PG: Well, thank you so much for talking with me.

RCY: Well, that’s quite a ride, it’s nice to chat with you anyway, and see an old friend.