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The Birth & Evolution of the NCCN

Simone, Joseph V. MD

doi: 10.1097/01.COT.0000483231.77060.1c
Opinion
Free

I attended the 21st annual meeting of the National Comprehensive Cancer Network (NCCN), which met in Hollywood, Fla., this spring. I had not attended since I formally retired from academic medicine in 2001. Because I was one of the founding members and the first chairman of its Board of Directors, Robert W. Carlson, MD, the current CEO, invited me to attend. I was curious for two reasons: 1) I wanted to know how NCCN had fared in the past 15 years, and 2) its development is a good story in which I played a role. More important, NCCN has become a vital organization because it develops, and updates regularly, cancer therapy guidelines that are widely available in the U.S. and around the world. It has expert panels for each cancer type that meet regularly and describe the degree of certainty and solidity for each recommended guideline based on available data and experience.

A bit of background history will be useful to understand the foundation of NCCN. In the 1980s, Medicare changed its hospital reimbursement system from a cost plus basis to one based on Diagnosis Related Groups (DRGs), later called the Prospective Payment System (PPS), which attempted to control inpatient costs by using the average regional cost for a disease or procedure and the length of stay as a payer benchmarks; this rule was applied broadly. However, specialty hospitals, such as children's hospitals and some freestanding cancer hospitals, were later exempted from PPS because there were too few such hospitals in any region to set a valid average cost and because these centers had more patients with advanced disease.

The original eight cancer hospital exemptions went to Memorial Sloan Kettering, MD Anderson, Roswell Park, Fox Chase, City of Hope, USC-Norris Cancer Hospital, Dana-Farber, and Fred Hutchinson. These institutions were allowed to charge on a negotiated cost plus basis; this gave them a huge financial advantage. Others were added later. Representatives of this initial group of PPS-exempt cancer centers met regularly, especially after the general election of 1992.

In 1993, the new Clinton administration attempted to radically change how hospitals were paid. This caused uproar among academic centers of all kinds because one of the provisions in the draft proposal was to redirect patients to community hospitals that were less expensive than academic hospitals. I had been at Memorial for only a year and became deeply involved in trying to deal with the potential changes.

Meetings with representatives of the all the PPS-exempt cancer hospitals were intense as we struggled to focus on a plan. This was not easy. Some felt the goal should be to protect market share. We met with politicians, medical directors of large corporations, and insurers trying to make a case for sending patients preferentially to these well-known cancer centers. We did not get very far. We learned that insurers were made up of regional branches that operated under different laws. A few of us came to believe the attraction of higher quality of care should be promoted. We tried that with medical directors, insurers, etc., but we had a big problem: there was no objective evidence that the marquee cancer centers gave better care or cured more patients than community hospitals.

Nonetheless, I was asked to lead a subgroup to develop a plan around the idea of higher quality and, incidentally, to serve as the first head of the project. Some colleagues and I pitched the idea of the developing cancer care guidelines to the PPS-exempt centers and received mainly a cool reception. This was partly due to the fact that we needed money from each participating center to fund the development of the guidelines. With the invaluable help of Cathy Harvey, DrPH, and Bruce Ross, we managed to get funding commitments from each center via annual dues (I think it was over $100,000 per year) and we drafted a strategic plan.

We later realized we could not pull this off with volunteers only and needed a full-time leader and staff. NCCN then hired Bill McGivney, PhD, and, after a slow start, the program began to take off. McGivney started the annual NCCN meetings in Florida, which were highly successful and provided some income. He also promoted disease-specific committees of volunteers from the participating cancer centers. Becoming a member of these committees became a coveted post. After I left Memorial in 1996, NCCN continued to do well and became a reliable national and international source for cancer care guidelines, which were offered free of charge and, eventually, were published in many languages. The NCCN became the primary trusted source of treatment guidelines globally.

Fast forward to 2016. NCCN had its largest ever turnout of attendees this year. More than 1,200 registrants filled the Diplomat Hotel. In fact, the NCCN cannot return to that venue after many years of going to the same place because the attendance had grown so much that the expected attendance was too large for the Diplomat and the meeting will be moved to Orlando in 2017. One of the more interesting things I observed by schmoozing and chatting round the coffee pot and posters is that this annual meeting seems to attract a larger proportion of oncology nurses and other non-MD cancer caregivers than ASCO and other large meetings. That is a very good sign since nurses provide most of the care

This year's agenda looked rather familiar with the specifics differing because of advances in the science and the evolution of caregiving. As usual, the speakers of the presentations were experts in their field and presented clear data and opinions, with the usual precautions against stretching the results too far.

I wish to describe two sessions that were unique for me compared to past NCCN meetings, and a very welcome change. The first presentation on the first day was on palliative care, a topic absent from the meetings I attended years ago. The presentation was followed by a panel discussion on the matter. I heard many compliments from those who attended that session. It is a topic that has too long been ignored because many doctors do not want to give bad news to patients and their families that they are stopping cancer therapy (no effective drugs available) and switching to treatment of the patients symptoms, physical, spiritual, and mental.

My only disappointment was that it did not go far enough. Care of cancer survivors is often neglected and the oncologists too often do not follow the patient after therapy has stopped to offer help for a variety of common problems, such as psychosocial, mental, family disruption, etc. I also believe NCCN should consider having guidelines for managing the care of cancer survivors.

The second example was the keynote session on the second day of the meeting. Its title was “Cancer Care in an Election Year.” There were six experts in politics and political policies, two were also practicing physicians and one was a member of Congress. It was a lively, erudite discussion from a panel equally divided politically. They knew and respected one another and did a wonderful job of describing the difficulties of improving health care and controlling its cost. I have never heard a better discussion of the topic. These were smart, deeply engaged experts who really cared a lot about things like out-of-pocket costs of care, which many cannot afford; the risks and potential rewards of bundled payments (doctors and hospitals must negotiate on who gets what); and many other important issues.

My snapshot view of NCCN in 2016 instilled in me the confidence that it had evolved favorably in the recent years and seemed to be on the right track.

Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.
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