As I talk to people about participatory medicine and the e-patient principles, often the first belief to transform is that it’s inherently risky to “do your own googling” and inherently safer to just trust “the system” (or “your doctors” or whatever form it might take).
The error of this belief is illustrated by another tragedy that’s just been reported. Please read carefully, because it’s easy to think I’m saying something I’m not.
When Alex Koene’s parents were told their 15-year-old son was dying of bacterial meningitis, the couple donated his organs for transplant. But he actually had cancer, and 2 of the 4 recipients have died.
A landmark 2000 study in JAMA cited that medical errors are the third leading cause of death in the US, after cancer and heart disease.
In contrast to this, on another blog Gilles Frydman commented
You wrote: “As I see it, acting on medical advice from an unidentified, unqualified strangers on the internet can “put lives at risk.”
We have been hearing this for close to 15 years now and NO ONE has been able to report a single case of “death by Internet medical information”.
Patients, please hear this: The healthcare system is an invaluable resource to us, but SO ARE YOU.
Patients and providers alike, please hear this: Neither patients nor the Internet nor the healthcare system is flawless.
The healthcare system is under enormous stress. When a patient and his/her community want to do everything they can to improve their odds, they should not hesitate to become informed. There is no inherent risk in learning and bringing information to the table.
To the contrary, I suspect there’s a good chance it IS risky to work with a doctor who doesn’t want your contributions. (Hm, this would be a good thing for the Pew Internet & American Life project to research: correlation between outcomes and doctor attitudes about participatory medicine.)
As we keep being reminded by these medical tragedies, there are risks in getting medical care. (Hell, you already have a risk when you NEED medical care!) Just don’t let anyone tell you it’s dangerous to learn everything you can about your condition – as Gilles said, there’s no evidence that anyone has ever died from seeking medical information.
That puts patient empowerment at the bottom of the list of causes of death. Think about that.