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Improving Patients' Understanding of Cancer: A Perspective from Al B. Benson III, MD

By Al B. Benson III, MD, Associate Director for Clinical Investigations, Professor of Medicine, Robert H. Lurie Comprehensive Cancer Center of Northwestern University; President, Association of Community Cancer Centers

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, NCCN.com, provide that information and, importantly, encourage patients to use the knowledge to facilitate (rather than replace) communication with their oncology care team.

At this time, NCCN Guidelines for Patients™ are available on breast cancer and on non-small cell lung cancer, but before the year ends, that same level of information will be available for at least four more high-impact disease sites.  NCCN.com also provides information to 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 NCCN.com and the NCCN Guidelines for Patients™ represent 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 physicians to point their patients to NCCN.com and the NCCN Guidelines for Patients™ to help them understand their cancer and to make conversations more productive.

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