Andrew Schorr‘s recent comment also merits a separate post:
I am a 12-year leukemia survivor and very grateful to the ACOR community members who helped me numerous times along the way.
I have dedicated my life to creating community online and also, in a supplementary way, on radio. But my concept of community is a bit different. I believe it should not be seen as patients doing their own thing because doctors didn’t either listen to them or give them enough time – or lacked knowledge. I believe patients, caregivers AND specialists/researchers can easily be in ONE community together toward a common goal of better health for current patients AND future ones.
If you look at my little home-grown site, www.patientpower.info (with generous support and cooperation from the nation’s top medical centers AND their patients), we have brought together inspiring patients and renowned experts in a dialogue. In a few weeks we will add P2TV, much like CNN’s I-reports where patients will send in videos of their stories and also their questions. I am hopeful it will take off. And I am actively working to partner with community folks like Trusera and medhelp.org to form a union, in Health 2.0, of patients AND health care professionals who have devoted their lives to those same health concerns.
As an aside, I know the M.D. Anderson docs read patient comments on ACOR lists. They often know what a patient like me is saying BEFORE I come to see them. So the phantom community of patients and docs has been there a long time. Now I am working to make it all transparent.
Here are our current top 5 programs that illustrate patients and doctors working together:
1. A Team Approach to Treat Advanced Lung Cancer
2. Robotic Myomectomy: Treating Uterine Fibroids While Preserving Fertility
3. Advances in the Treatment of Bladder Cancer
4. Cell Phones & Brain Tumor: Should You Worry?
(Note from Susannah: Take the time to listen to a few of these shows — they are a high-quality example of the long tail of podcasts. Big extra points from me for posting not only the full-length audio but also a PDF of the transcript.)
e-Patient Dave says
Little home-grown site??? I’m in awe! Man, I had no idea you were out there! Huzzah!
MAN did you just take a (theoretical) workload off my mind. You ROCK!
I betcha I’ll submit something to P2TV. And I’ll sure blog about it on my elsewheres.
Susannah Fox says
Matthew Holt alerted me to this letter to the editor of the New York Times:
>>Surfing the Web does not equal the rigors of medical school. If patients are not able to spend time talking through their illnesses or concerns with a doctor, they should find another one. The “too much information” world on the Internet can be misleading and dangerous. Who would try to repair their HDTV? While it is important to be informed, many people are experimenting with their lives, and risking overly complicating their care.the internet plays an important role in such tech purchases — why wouldn’t it be the same for health care purchases?
However, we do need to honor that this is a very real sentiment — our typology shows that 49% of adults are not huge fans of technology.
What advice do you have for consumers like this letter-writer? What advice do you have for health website operators?
Andrew Schorr says
In response to your question. I agree there are many people not online or not comfortable using it yet when they are in the pain of a health problem. That’s why three years ago I began to leave HealthTalk.com, which I founded with my wife, and – at my own expense – bought air time for a weekly health talk show on the major talk radio station in my home city of Seattle. I had hoped a syndicator would pick it up but I have found they have no interest in serious medical topics on an ongoing basis.
I got up early Sunday mornings for 3 years and won sponsorship from major medical centers. But I knew the ongoing reach would be online – hence http://www.patientpower.info. I stopped the broadcast radio show in March of this year. But I have continued with another approach on radio. I produce Patient Power Minutes that air in drive-time on all-news radio in Seattle and soon in St. Louis. These are designed to engage people and encourage them to go to the web for the “full meal deal.”
One other point about the NY Times letter – While it’s true patients typically didn’t go to medical school, it is their body and, often, long-term health that’s at stake. They owe it to themselves to be more involved at least as much as they are in planning a trip (and they are not travel agents), buying a car (and they are not mechanics), and buying a sound system (and they are not sound engineers). If we agree no doctor can keep up on everything, then isn’t it very worthwhile for patients to at least know which questions to ask with the hope a well-meaning doctor will pause and think about it if it’s something they hadn’t considered?
Andrew in Seattle
hanan hamdan says
can u send me a letter that tells about a patient who has a canceer
Josh Bochy says
Random question: I know you are using wordpress for this blog, but have you tried any other platforms. I am trying to decide for my blog? and I ask because I like yours.
Hi. I’m frenchy. Your comment can interest lot of people in my country. So, if you re ok, i can copy the subject on a french blog. 😉