20 Years of Creating and Embracing Guidelines in Cancer Care

When the first National Comprehensive Cancer Network (NCCN) Guidelines were developed 20 years ago, even the participating members were skeptical they would be able to come to an agreement and build something lasting, according to some of the people who were there at the beginning.

On the first day of the NCCN 20th Annual Conference in Hollywood, Florida, March 12-14, panelists took a look back at the last 20 years of NCCN and why it succeeded when others had failed before with Clifford Goodman, PhD, of The Lewin Group, moderating and guiding the discussion.

NCCN was created from 13 academic medical centers that were deeply concerned with Hillary Clinton’s proposed healthcare plan in the mid-1990s and wanted to make some decisions that would keep them important when things changed, according to Robert C. Young, MD, president of RCY Medicine.

They chose to implement guidelines that would allow them and others to measure the quality of the cancer care they were delivering against a set of agreed-upon guidelines.

“Unfortunately, fear is a wonderful motivator and that turned out to be the reason why these 13 institutions that compete with each other in some sense got together,” Dr Young said.

Both Al B. Benson III, MD, from the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, and Samuel Silver, MD, PhD, assistant dean for research at the University of Michigan Medical School, remembered that people weren’t sure if the cancer centers could work. But they found everyone willing to collaborate and they credited this cooperation to the late Roger J. Winn, MD.

“What quickly became apparent with the formation of the panels—and, certainly, the wisdom and efforts of Dr Winn—it became very clear that panel participation was an enjoyable activity,” Dr Benson said. “You were working with your peers and the discussions were serious and often on target.”

Robert Carlson, MD, the current chief executive officer of NCCN, who had been a panel chair at the time of NCCN’s inception, agreed that one of the reasons the NCCN succeeded is because it started from a place of collaboration.

Coming from a new cancer center that had been designated in 2005, Timothy J. Eberlein, MD, of the Siteman Cancer Center at Barnes-Jewish Hospital, explained that as a new arrival it was important to embrace the guidelines, practice the guidelines, and participate in the construction of the guidelines in order to formulate multidisciplinary care.

Lee N. Newcomer, MD, MHA, from UnitedHealthcare, admitted that 20 years ago NCCN and guidelines didn’t mean much because payers had seen other come and go, leaving behind 130-page guidelines that were essentially useless. The industry changed its tune, though.

“Ten years along, you had a mature product that really did help people if you used it,” he said.

According to Dave McFadden, MS, RPh, of Gilead Sciences, Inc, industry quickly realized what these guidelines would mean, namely that if a drug wasn’t in the guideline it probably wasn’t going to get reimbursed.

“The guidelines told us where we needed to generate evidence,” he explained.

Guidelines have been useful for payers so that when they decide not to pay for a drug they had proof to back them up. It helped that NCCN guidelines were available for anyone to access and look through and patients and providers could understand that payers’ decisions weren’t just about saving money, but about the best patient care.

Mary Lou Smith, JD, MBA, co-founder of the Research Advocacy Network, had patients’ best interest in mind when she became involved with the NCCN committees as the first patient representative.

“The end user of the guidelines is the patient, and, therefore, that patient should be represented,” she said.