There's no way physicians can keep up with all the medical information available on the Internet, and there's no way that they will be as motivated as cancer patients to read as much of it as possible. It isn't a sign of failure or weakness to accept these realities.
Panel to doctors: Don't be a know-it-all
That was the message at “Leveraging Virtual Patient Communities for Optimal Clinical Care and Research,” one of the final sessions at the American Society of Clinical Oncology's 48th annual meeting held June 1-5 at Chicago's McCormick Place. More than 31,000 people attended. Unfortunately, I was unable to attend the morning program, but—keeping in the spirit of the presentations—I was able to catch it online later.
The panel consisted of Dr. Howard (Jack) West, Medical Director, Thoracic Oncology Program at the Swedish Cancer Institute, Seattle; Dr. George Demetri, of the Dana-Farber Cancer Institute and Harvard Medical School; and Dave deBronkart, better known in cyberspace as “e-Patient Dave.”
“It's just impossible to keep up with the torrent of new medical information coming out,” West said, adding that the challenge is, “if the physician is not able to access it and channel it for their patients, they can actually become a bottleneck.”
Demetri took the audience all the way back to 1996—or, as he called it, “the time before Google.”
Before everything else, there was the Association of Cancer Online Resources, or ACOR, where cancer patients talked to each other “in ways not heard in waiting and transfusion rooms.” At first, Demetri was just a lurker, eavesdropping on the conversations where healthcare professionals were often described as jerks, and he said sometimes that reputation was justified. “We have to overcome that,” Demetri said. “It's up to us to change that reputation with our patients.”
He told of how later ACOR was used as an “emergency notification system.” That's when it was discovered how leiomyosarcomas, found in the smooth muscle tissues of internal organs, were being misdiagnosed as gastrointestinal stromal tumors, also known as GISTs and the alert was sounded online.
“ACOR really did save lives,” Demetri said. This was accelerated as Google emerged on the scene and opened up new research opportunities for finding effective treatments for rare cancers as patients with these conditions came together on the Internet.
Rather than fearing the engaged patient community, Demetri described it as “a wonderful thing” that is forcing integration between clinicians formerly working in isolated silos or in competing universities or health systems. Cancer patients don't care about these traditional barriers, he said, and are demanding collaboration and will “not stand for anything less.”
DeBronkart is one of these patients. He mentioned that he got his start in the business world in the typesetting industry, so he knows how one must adapt to a changing environment. “Any physician whose sense of self worth depends on knowing everything is in big trouble,” he said.
“It's no failure on anyone's part if a lowly patient has something they haven't seen.”
Follow Andis Robeznieks on Twitter: @MHARobeznieks.
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