Patient-Journalists Multiply at a Major Medical Conference

Published on
December 19, 2011

The pressroom was full at the recent meeting in San Diego of the American Society of Hematology. More than 20,000 physicians and researchers from around the world attended to discuss the latest research in blood-related conditions from lymphoma and leukemia to sickle cell disease. Camera crews crowded the hallway outside the pressroom and news conferences were full as journalists from many countries worked hard to bring medical news to physicians back home.

But the people gathering information this time also include a significant contingent of patients. These are people living with one of the conditions covered at the meeting. They want to latest information for themselves, often at a pivotal time in their care, and also for people who follow their blogs and postings on listservs and Facebook. They are people like Brian Koffman from Newport Beach, California. Brian is a practicing family physician. But this would never be a medical meeting he would attend. Now, however, it has become vitally important for him because he is fighting for his life, diagnosed with chronic lymphocytic leukemia. And right now the leukemia is winning against so powerful therapies that did not have a lasting, positive effect in his case.

Image removed.Brian attended this meeting with a small video camera in hand. He attended most of the CLL sessions and chased down world experts in the hallways. His key question was: "Is there anything new that patients like me need to know about?"  Fortunately, the answer was a positive one. Two drugs in trials are proving to be highly effective for patients like Brian and they don't have the significant toxic side effects of chemotherapy. They are pills and not IV infusions. Brian's spirits were buoyed. By going to where doctors get their direct information on what's new, he leapfrogged over his own doctor, the general press, and the medical news media to get in-depth information unfiltered. It could save his life as a delay in getting the information about these new drugs could have made intervention with them too late. He now plans to enroll in a clinical trial with one of the experts he interviewed.

Brian is also brining the news to many other patients. And I interviewed him as a "reporter" for patient power on what he learned. His perspective as someone living with the disease brings tremendous credibility and, of course, has high human interest.

Brian wasn't the only patient seeking information at the conference. There was a host of bloggers, some even supported financially by drugs companies who hoped they would cover news that was significant for their corporate interest. My take is these patients however, were in no one's hip pocket.

My feeling, as a journalist and leukemia patient myself, is that this trend is inevitable. As patients want to be more in control of their care and are often facing life-threatening or life shortening conditions they naturally want to know more than what the traditional press provides, and they want to know if faster. They want in-depth information to make decisions whether to enroll in a clinical trial like Brian or fly across the country to get a second opinion, like I did. 

The journalists from big name organizations better move over. The notebook or microphone next to you is now likely to be in the hand of someone living with the diagnosis being discussed.

(Photo by "Reporter's notebook" by Roger H. Goun in Flickr Creative Commons)