Mar 25 2011

Recap of the NCCN 16th Annual Conference

National Comprehensive Cancer NetworkThe 16th Annual National Comprehensive Cancer Network Conference (NCCN): Clinical Practice Guidelines and Quality Cancer Care, was held on 09-13 March 2011 in Hollywood, FL.  The conference hosted almost 2,000 registrants including oncologists, nurses, pharmacist, and other health care professionals.

The general sessions provided updates to the changes in the guidelines for various cancers along with the details of the clinical trials that resulted in the changes to these guidelines.  The NCCN guidelines are the standard for oncology care and are developed as a result of a thorough review of clinical evidence and input from expert medical professionals.  The guidelines are the most widely used guidelines in oncology and have been requested for use by over 115 countries.  Copies of the current guidelines can be found here.

An expert panel, moderated by Clifford Goodman, Ph.D., a healthcare consultant and chair of the Medicare advisory committee, consisted of Scott Gottlieb, MD, American Enterprise Institute; Louis B. Jacques, MD, Centers for Medicare & Medicaid Services; Michael Kolodziej, MD, Innovent Oncology; Mark G. Kris, MD, Memorial Sloan-Kettering Cancer Center; Lee N. Newcomer, MD, MHA, UnitedHealth Group; Andrew C. von Eschenbach, MD, formerly of the National Cancer Institute and U.S. Food and Drug Administration (FDA), currently with Samaritan Health Initiatives, Inc.; and Elizabeth Thompson, Susan G. Komen for the Cure.

Dr. Goodman invited the panel to consider the issue of molecular testing related to four perspectives:

  1. Who was in charge of these tests/regulatory responsibility
  2. Evidence-how do we know it works and what does it mean
  3. Translation of the test into everyday practice
  4. Value for money

The panel began discussion of molecular testing and the implications for practice and policy.  The panel emphasized the need for more data, standardization, and accurate marketing for these diagnostic tests.  When developing a molecular test, analytical validity, clinical validity, and clinical utility all need to be carefully determined.  These tests are ultimately a mechanism for saving money and improving outcomes in cancer patients, and for some of these tests, large randomized prospective trials are still needed to validate these results.

A poignant panel, moderated by Sam Donaldson, ABC news veteran and cancer survivor, addressed the various challenges and roles that caregivers and their families deal with when their loved one has cancer.

The panelists included: Bill Cower, analyst on The NFL Today and former head coach of the Pittsburgh Steelers; Suzanne Daulerio, daughter of the late Patricia Daulerio, a long-time employee of NCCN; Charlie “Chaz” Ebert, wife of Roger Ebert; Priscilla Mack, wife of Senator Connie Mack; Jai Pausch, wife of the late Randy Pausch, acclaimed Carnegie Mellon University professor and author of The Last Lecture; Mary Beth Reardon, RN, MS, of H. Lee Moffitt Cancer Center & Research Institute; Liz Scott, mother of the late Alex Scott, founder of Alex’s Lemonade Stand Foundation; Samuel M. Silver, MD, PhD, of the University of Michigan Comprehensive Cancer Center; and Jill Ellen Snow, wife of the late Tony Snow, former journalist and White House Press Secretary.

Common themes discussed during this panel included needing to “be the strong one” and feeling the need to learn as much about the disease as possible.  Anger, stress, exhaustion, fear, humility-all resonated amongst the panel members.  One of the most difficult issues centered around how to deal with end of life issues, especially when having to convey this to children of the loved one with cancer.  All of the panelists expressed the need for honesty from their treatment team and urged health care professionals to think about the caregiver when developing guidelines for treating cancer.

This is a post by Laura DiMichele, Ph.D., R.A.C. Laura is a Clinical Strategy Scientist at Cato Research.