Improving Patients' Understanding of Cancer

Author: Al B. Benson III MD
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I recently had the pleasure of participating in an important announcement—the launch of NCCN Guidelines for Patients that are directly based on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for health care professionals. As someone who has been involved in developing the NCCN Guidelines for many years, I know very well their value to practicing physicians. As someone who also sees patients on a regular basis, I know that these new Guidelines for Patients can be just as valuable—to patients certainly, but not only to patients.

Patient-physician communication has changed drastically over the past several decades. Gone are the days when doctors either withheld the diagnosis of cancer from their patients or handed out information in bite-sized portions, depending on what they perceived the patient could handle—or what they themselves were capable of communicating. Gone too are the days when patients passively accepted whatever information physicians chose to tell them. Patients today are, and should be, active information seekers, and far more importantly, knowledgeable partners in their treatment. The “norm” for patients now is to educate themselves about their disease, often online, to be able to discuss their individual cancers—and to expect their treatment team to involve them in the decision-making process on a step by step basis.

And there is certainly a wealth of information, both accurate and less so, available to patients. This is why the NCCN Guidelines for Patients are an important asset to all of us involved in making decisions about treatment options and in communicating those options to patients, caregivers, and families. To make the partnership between patients and clinicians work, patients must have the right tools—timely, accurate, and highly specific information about their cancer and its treatment. NCCN Guidelines for Patients, and their parent website,, provide that information and, importantly, encourage patients to use the knowledge to facilitate (rather than instead of) communication with their oncology care team.

As of press time, NCCN Guidelines for Patients are available on breast cancer and on non–small cell lung cancers, but before the year ends, that same level of information will be available for at least 4 more high-impact disease sites. also provides information to your patients and their families on other aspects of cancer, including finding resources, understanding screening, living well during treatment, and survivorship questions.

The development and launch of and the NCCN Guidelines for Patients represents a great step in improving the quality of care for patients everywhere by giving them access to the same information that we, as clinicians, use on a daily basis to make our treatment decisions. I encourage you to point your patients to and the NCCN Guidelines for Patients to help them understand their cancer and to make conversations more productive.

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

Al B. Benson III, MD, is a Professor of Medicine at Northwestern University's Feinberg School of Medicine and Associate Director for Clinical Investigations among other professional roles, including attending physician at Northwestern Memorial Hospital.

Dr. Benson earned his medical degree at the State University of New York at Buffalo after which he completed an Internal Medicine Residency at the University of Wisconsin Hospitals.

Dr. Benson is active on numerous professional committees, often as an officer. He received the ASCO Statesman Award and has served on a number of committees. In addition, he is a member of several medical societies and is a Past President of the Illinois Medical Oncology Society and a member and immediate past-chair of the Board of Directors of the NCCN. He serves on several NCCN panels and is the past President of the International Society of GI Oncology (ISGIO).

Dr. Benson's research is primarily in the areas of gastrointestinal cancer and other clinical trials, biologic therapies, and cancer guideline development. He has authored or coauthored numerous reports, reviews, and book chapters, and his research has been awarded funding from a variety of sources, including the NIH.

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