December 2nd, 2011 by AndrewSchorr in News
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Go south from the “O.C.” – Orange County, California, where the sun shines on the beaches and girls in bikinis play volleyball, and you find yourself in San Diego, land of the surfers in the shadow of a large U.S. Navy base.
It’s also home to a large convention center right by the Pacific. And that’s where 30,000 blood doctors and researchers from around the world are about to converge for the annual American Society of Hematology (ASH) annual meeting. Beginning December 10, they’ll absorb study data for blood related cancers like leukemia and lymphoma and blood conditions like sickle cell disease and hemophilia.
Tucked off to one corner is the news media – the regulars like The New York Times and USA Today and a host of journals read by doctors around the world. And then there’s Patient Power. This year Read more »
*This blog post was originally published at Andrew's Blog*
November 30th, 2010 by AndrewSchorr in Better Health Network, Health Policy, Opinion
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We are invading their home turf. Increasingly, in among the thousands of doctors, scientists, and medical industry marketers at the largest medical conventions you are finding real patients who have the conditions discussed in the scientific sessions and exhibit halls. Patients like me want to be where the news breaks. We want to ask questions and — thanks to the Internet — we have a direct line to thousands of other patients waiting to know what new developments mean for them.
I vividly remember attending an FDA drug hearing a few years ago and how there were stock analysts sitting in the audience, BlackBerries poised for the “thumbs up” or “thumbs down” on whether a proposed new drug would be recommended for approval. (At that session it was thumbs down.) When the analysts got their thumbs moving, a biotech stock tanked in minutes and before long the company was announcing layoffs. Those analysts were powerful reporters.
Now patients are reporters, too, and their thumbs are just as powerful. So are their video cameras and microphones. These folks are a different breed than the folks from CNN or the scientist/journalists from MedPageToday. Their questions are all-encompassing: “What do the discussions about my disease or condition here mean for me? What should change in my treatment plan? What gives me hope? What’s important for my family to know?” Read more »
*This blog post was originally published at Andrew's Blog*
