NCCN: Evolution in the Early Years

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Robert C. Young
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No sooner had NCCN been formed, leadership structure defined, and goals for creation of the guidelines established, when one of the major drivers to its formation, the Clinton Health Plan, also known as the Health Security Act, evaporated in the rarefied air of national politics. Perhaps surprisingly, however, no one gave much thought to disbanding what had already been created. It was already apparent that the pressure to demonstrate quality was unlikely to disappear, and that sound, credible guidelines would benefit both the NCCN Member Institutions and the oncology community in general.

However, once the decision to proceed was made, the organization faced 2 substantial challenges: traditional support from the pharmaceutical industry was becoming increasingly constrained, and the NCCN Member Institutions recognized that contributions from industry threatened the integrity of the guidelines. We needed a firewall between the industry and our guidelines, and we needed money in addition to our dues. That’s when then-CEO William McGivney, PhD, had a visionary suggestion: develop the guidelines, make them the gold standard for cancer care, and GIVE THEM AWAY! What?

The reasoning was simple. First, once the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) were established, no other organization would be able to compete with the credibility of authors and the rigor with which the guidelines would be continuously updated. Second, business entities would be willing to pay for the use of credible peer-reviewed guidelines, and this could be a second and major income stream for NCCN. Use by oncologists across the country would only further enhance the credibility of the NCCN Guidelines, and therefore providing free access to oncologists was actually beneficial.

This reasoning also proved correct. The NCCN Guidelines have been successful beyond anything the founding organizations could have imagined. In 2014, there were more than 2 million unique visitors to the NCCN Web site (NCCN.org) and more than 6 million downloads of the NCCN Guidelines.

However, once oncologists had a set of guidelines, would they continue to be interested in updates? This was put to test by the NCCN Annual Conferences. No one questioned that the first meeting would be a success, given the murmurs about the guidelines: we knew lots of oncologists and companies would be there, if only to see what was going on. However, some of us, including me, were skeptical about interest in subsequent meetings. As anyone keeping up with NCCN knows now, that skepticism was misplaced. The NCCN Annual Conference has become an important national oncology forum, and the NCCN conferences have shown remarkable growth and achievement. In fact, 2015 is now the 20th year with this successful format.

One of the issues we struggled with in the early years was establishing criteria for new member institutions. Sounds familiar, doesn’t it? But in our formative years, the major interest in joining this fledgling organization came from cancer centers that were geographically close to founding member institutions, causing the latter to be concerned that they would lose some competitive advantage. The board finally decided that the 2 criteria new NCCN Member Institutions would need to meet were (1) broad geographical distribution, and (2) unique expertise not already present.

Those few criteria proved satisfactory in the early years, but joining NCCN was not as attractive then as it is now. In fact, several institutions that have subsequently become members initially declined to join! Although some outside NCCN might disagree, I don’t think decisions on new member institutions were ever made with arrogance. NCCN needed to show that bringing in new member institutions benefitted the organization with something more than just numbers. We also worried about creating a board that was unwieldy and nonfunctional if membership became too large. One suspects that this is a challenge NCCN will continue to face.

Under Bill McGivney’s stewardship, NCCN became very successful in securing support from many corporations that were interested in using our guidelines. He was also successful in guiding the development of financially supportive educational programs which have now become one of the important staples of the organization. Bill was also instrumental in establishing the Drugs & Biologics Compendium, which is now widely used by payers to define drug coverage.

As I look back on the growth and development of NCCN, I think its most remarkable quality has been the ability to adapt to a constantly changing environment. This quality, present since the early years, will continue to be needed as NCCN evolves in response to the needs of the oncology community and of patients with cancer.

Robert C. Young, MD, is President of RCYMedicine, engaged in cancer-related consultation. He formerly served as Chancellor of Fox Chase Cancer Center and, for 18 years prior, as the President and CEO of Fox Chase Cancer Center. He is a past-President of ASCO, ACS, and the International Gynecologic Cancer Society. Dr. Young was awarded ASCO’s Distinguished Service Award for Scientific Leadership in 2004 and was corecipient of the 2002 Bristol-Myers Squibb Award for Distinguished Achievement in Cancer Research for his research in ovarian cancer. In 2013, he received the AACR Margaret Foti Award for Leadership and Extraordinary Achievements in Cancer Research.

Dr. Young served from 2004–2009 as Chairman of the Board of Scientific Advisors of NCI. He is past chair of the board of NCCN and a member of the National Cancer Policy Board of the Institute of Medicine. He has served as a member of the subspecialty board on medical oncology for the American Board of Internal Medicine, and on the Experimental Therapeutics study section of NCI. He served as an associate editor of the Journal of Clinical Oncology from 1987–2001 and currently serves as chairman of the editorial board of Oncology Times.

The ideas and viewpoints expressed in this editorial are those of the author and do not necessarily represent any policy, position, or program of NCCN.

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