In his ASCO Connection commentary, “ The Awakening of the e-Patient: Are We Prepared to Engage?” Dr. Don Dizon confirms from the provider perspective what we at NCCS know to be true: patients want to be engaged in decision-making about their care, especially for a serious diagnosis like cancer. Dr. Dizon writes of the emergence of “e-patients,” who spend time researching their disease on the Internet and connecting via social media with other patients. To be sure, there are challenges, including the quality of the information found online and the additional time it may take for physicians to talk through studies with patients and help explain the data.

Dr. Dizon writes, “More and more often, patients are coming in with fairly sophisticated questions about their pathology, treatment regimens, and clinical trial options. I have found myself rendering treatment recommendations only after I’ve sat with a newly diagnosed patient for some time discussing (and yes, even debating) the data. I have also come to appreciate that an evidence-based approach to many cancers must take into account the individual and that her preferences and goals are as important as the results from the randomized clinical trials we hold as the gold standards. Not only do I appreciate these conversations, I have come to anticipate them. Unfortunately, this is not a universal experience.”

We are grateful to physicians like Dr. Dizon who understand the importance of engaged patients, recognize that treatment decisions require an understanding of the individual’s goals and preferences, and take the time to have thorough discussions with patients about their care. NCCS is developing a tool to help patients communicate their goals and preferences, and we will be launching it soon, so stay tuned.

 

Post by Shelley Fuld Nasso, NCCS Chief Executive Officer

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