As the National Comprehensive Cancer Network (NCCN) celebrates its 20th year, The ASCO Post asked its Chief Executive Officer, Robert W. Carlson, MD, to reflect on the organization’s accomplishments, mission, and future and on the role he may have played in its success. 

The Early Years

You became CEO in January 2013, but you’ve been involved in NCCN since its inception. What were those first years like?

NCCN was founded by a group of visionary leaders who came together 20 years ago to assure access of patients to high-quality cancer care. Interestingly, they were from 13 different academic centers that traditionally competed for funding, faculty, students, and patients—now working together. That commitment and focus on the patient were central to the founding of NCCN, and it continues today, with our alliance of 26 cancer centers.

We developed our first set of NCCN Guidelines in Oncology in 1996, as a result of tremendous threats we saw to the practice of oncology, especially in academic centers. The health maintenance organization movement was in full swing. There were forces aimed at dictating to physicians and patients the care that would be provided. The NCCN member institutions saw clinical practice guidelines as a means of assuring that cancer centers would have an optimal role in deciding what that care should be. Our aim was to convince payers that we provided effective and efficient care.

What were those original Guidelines like?

The first Guidelines were both complicated and visionary and, compared to the current Guidelines, very simple. The scientific basis and rigor with which they were developed have rapidly evolved since then. For example, the original 7 adult panel Guidelines were backed up by a total of 104 references. In those same 7 Guidelines, for the current versions, we now cite 3,772 references.

Some of our initial decisions have proven to be visionary. We provided the Guidelines free of charge on the Internet. As a result, in 2014 alone, there were 6 million downloads. Our decision to publish the Guidelines seems so logical now, but the original intent was for member institutions to use them as a business advantage.

We included in our original panels not only experts from multiple disciplines, but fully empowered patient advocates who kept the Guidelines grounded to the patients’ needs. We displayed our recommendations graphically, across the continuum of care, which was logical, intuitive, and critical to their rapid adoption and clinical usefulness. And we assigned our recommendations categories of evidence, which differentiated them as scientific, evidence-based documents. Some of these decisions proved to be inflection points in the history of the NCCN.

Assessment of Evidence by Experts

Back then, and now, not all recommendations are made without a sprinkling of controversy, right?

That’s very true. Remember the controversy surrounding the use of high-dose chemotherapy with bone marrow transplant in high-risk or metastatic breast cancer?  There were major differences of opinion between the NCCN breast cancer panel and bone marrow transplant panel, and when the breast cancer panel declined to place this in the original Guidelines, there was an outcry. Our two panels met (I was on the breast cancer panel) and had a contentious and heated discussion. I remember thinking we would never reach consensus. At one point, I said to the transplant advocates, “This meeting is over” and headed for the door. Rodger Winn, head of the Guidelines program, locked the door in front of me and said, “We are not leaving.”

Somehow, we went back to the table and formed a solution. Ultimately, transplant was not added to the main pathway, but we indicated that very high-risk or metastatic patients were candidates for clinical trials. This outcome ultimately proved to be fully ­appropriate.

This story is really about the patient. Although the bone marrow transplant lacked high-level evidence, we still gave patients access to a potentially important treatment. This story also illustrates a continuing theme for our organization: assessment of the evidence by experts, patient access, high-quality care, and patient-centric decisions. They continue to be central to the heartbeat of the NCCN.

Informing Coverage Decisions

What makes the NCCN Guidelines stand apart from others?

Our Guidelines and the NCCN Drugs & Biologics Compendium are used by more payers than any other documents. They have a breadth and depth that others lack and are efficient enough to be used at the point of care. In 2008, the Centers for Medicare and Medicaid and UnitedHealthcare recognized our Guidelines and Compendium as a means of informing their coverage decisions. This was a big change! When NCCN was founded, payers were challenging physicians and telling them what they would cover. Now, major payers were saying, “We think you got it right. Use your Guidelines, and you can tell us what to cover.” That was remarkable!

Future Initiatives

What new initiatives can the oncology world look forward to from NCCN?

As strong and as good as the Guidelines may be, we are not satisfied with where we are. Over the next few years, you will see us develop (working with IBM) a digitally based database that will move beyond the current graphical document, which cannot be processed by a computer-based system. This will give us the ability to incorporate the Guidelines into clinical decision-making systems to an extent that we have not been able to do with the graphical display. We are well along in this process and hope to debut this in 2016.

You will also start seeing enhanced descriptions of efficacy, safety, data quality, and cost in the Guidelines. And we will have “evidence blocks,” which employ a 5-point scale (for efficacy, safety, data quality, data consistency, and affordability) to help providers and patients understand and select among treatment options, based on the factors that matter most to the individual.

One of our most important initiatives is “resource stratification” of the Guidelines. Almost half our users reside outside the United States, many in low- to intermediate-resource areas. We will customize recommendations in accordance with basic, limited, enhanced, and maximal resources—always preserving the context of the full Guidelines. This will make the Guidelines relevant in almost all parts of the world.

Molecular Profiling

How will the Guidelines incorporate the growing number of molecular profiles that are starting to guide treatment selection?

Using molecular profiling for decision-making will be very complicated, but I also think that—once the evidence exists—our Guideline panels are uniquely positioned to respond to that challenge. Many of our institutions are using multigene testing, mainly for research purposes, and are learning how to use it in patient care. Although we have been incorporating molecular profiling for some time—using HER2, ALK, EGFR, RAF, and others—we know that the smaller the subset, the greater the statistical challenges, and the smaller the cohort, the less confidence we can have in the findings.

Value and Cost in Cancer Care

Achieving “value” in cancer care is increasingly important. How will the Guidelines deal with this imperative?

Value is in the eyes of the beholder, and that’s one of the challenges when we prioritize oncology treatments. Different patients will have different value systems, expectations, and resources. So our approach to value is to provide as much information as we can about the effectiveness of treatment, toxicity, and then cost and allow the patient to take that information and make a decision. The “evidence blocks” will be very helpful for this.

Will NCCN ever consider the actual cost of a drug in constructing its list of preferred regimens?

Yes and no. As our capability of looking at cost-effectiveness becomes greater, the Guideline panels will almost certainly begin to incorporate cost in some way. The challenge is that in this country (as opposed to countries with national health systems), cost of treatment varies. It may depend on the drug, the region, the institution where the patient is treated, the physician, the payer, and so forth. Within the U.S. health-care system, cost is complicated, and our estimates will be inexact, but I think it’s likely we will use cost to inform our preferred regimens in the future.

Financial Stability of NCCN

Speaking of costs, the financial challenges of maintaining NCCN and promoting new initiatives must be great.

NCCN is exceptionally strong financially. We have a robust and diversified revenue stream and are becoming more diversified with time. We are not at risk of a financial crisis in the foreseeable future!

Personal Style and Accomplishments

On a more personal note, how do you think your own leadership style has impacted NCCN?

The most fundamental thing is that I’m the first physician to lead the organization as CEO. So I bring the medical model with me—what’s needed at the point of care—and I bring some awareness of the patient experience. From my days at Stanford, I think I’m a strong collaborator, someone who can develop high-performing teams and who is open to examining all sides of an issue. I have no problem with being challenged! Sometimes that’s necessary. These are the characteristics I’ve brought to NCCN.

What are your proudest accomplishments as CEO of NCCN?

I am proud of a family of accomplishments, starting with the Board of Directors. We adopted a 5-year strategic plan in November 2012, and I came along in January 2013. Since then, we have achieved the vast majority of tasks within that plan and exceeded most of the metrics—not because they were set too low, but because this organization is vibrant and dynamic. We also have a staff that shares the mission and vision and can accomplish things efficiently.

A Look Backward

Finally, as much as you love this job, you must miss some things about your former life as a Stanford academic and clinician. 

Yes. I miss the people. Over 40 years at Stanford, I grew up with many people professionally, and they are very close friends. I had a very active academic clinical practice and miss each one of my patients. There is a relationship that develops that is very important. It’s gratifying to still see and hear from many of these patients, and I am still here for them if they need me. ■

Disclosure: Dr. Carlson reported no potential conflicts of interest.