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*
October 6th, 2011 by KerriSparling in Opinion
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Two weeks ago, I attended my third year at Kru Research’s ePatient Connections conference, and every year, I’m amazed at how many different industry people show up and showcase their impressive efforts … but how few patients. But this year, there were a lot of patients. Lots as in “more than five.”
For a conference with “ePatient” in the title, it was good to finally see more than just a handful of ePatients in the audience. (And this is thanks, largely in part, to the ePatient Bill of Rights project that took place on September 19th, across the hall from the SXSH event). And it wasn’t just a handful of diabetes patients – there were many health conditions well-represented at these events. For me, it was nice to talk about the universal issues that people with chronic illnesses face, instead of drifting around in the bubble of diabetes. I like stepping outside of our comfortable space and learning about what others are living with. I need that exposure to other types of patients … keeps me thinking globally.
Part of the panel discussion Read more »
*This blog post was originally published at Six Until Me.*
July 18th, 2011 by Elaine Schattner, M.D. in Opinion, Research
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Yesterday’s post was not really about Avastin, but about medical journalism and how patients’ voices are handled by the media.
L. Husten, writing on a Forbes blog, cried that the press fawned, inappropriately, over patients’ words at the FDA hearing last week, and that led him to wonder why and if journalists should pay attention to what people with illness have to say, even if their words go against the prevailing medical wisdom.
There’s a fair amount of controversy on this. For sake of better discussion in the future, I think it best to break it up into 3 distinct but inter-related issues:
1. About health care journalism and patients’ voices:
A general problem I perceive (and part of why I started blogging) is how traditional medical journalists use patients’ stories to make a point. What some of my journalism professors tried to teach me, and most editors I’ve dealt with clearly want, is for the reporter to find a person with an illness, as a lead, and then tell about the relevant news, and provide some expert commentary – with at least one person speaking on each “side” of the issue, of course – and then end the story with some bit about the patient and the future.
I argue that this form of medical journalism Read more »
*This blog post was originally published at Medical Lessons*
April 21st, 2011 by AndrewSchorr in Opinion, True Stories
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It is happening several times a day now. The phone rings. I get stopped at Starbucks, or at the dog park, or at the supermarket. “My friend may have a brain tumor,” “I have been short of breath,” “I am tired all the time.” Then come the questions: “What do you think I should do? Who should I see?” I am not a doctor, but people are increasingly looking to me as if I were one. It’s a little daunting.
As you may know, I’ve been producing and/or hosting programs on medical topics for patients since the mid 1980’s. First it was erectile dysfunction, then breast surgery, then multiple sclerosis, cancer, diabetes – you name it, I’ve interviewed someone about it. Town meetings, live audio webcasts, radio shows, and videos. I feel like I’ve gone to med school two or three times. And like a med student I’ve worried common symptoms could mean the worst diagnosis. That headache could be too much coffee OR it could be a brain tumor. Feeling tired could be you are snoring and have sleep apnea OR you have leukemia.
A number of years ago, having just moved from Los Angeles to Seattle, Hollywood called. A friend sold a 5 day a week medical show to MGM and he needed wife/partner Esther and me to be producers. We were the ones who wrote what flashed on the screen when a patient described their symptoms to one of the real docs who were stars of the show “Group One Medical.” “I have had some blood in my stool, the patient would say. Flash on the screen: could be hemorrhoids. Could be advanced colon cancer. We walked around the home/office worrying about every ache and pain. I am told that’s just what med students do. The most mundane could be life-threatening. Read more »
*This blog post was originally published at Andrew's Blog*
