Wednesday, November 2, 2011

Putting on my "cranky" pants

Though some people would say that I never take my "cranky" pants off...

My brother has two sisters; he calls me the cranky one and he calls our older sister the cheap one.

Right now, cranky sister is cranky.


This article, that's why.

Specifically, the article's conclusion is what has me reaching for the cranky pants:

"According to Dr. Mukewar, 'one of the best resources for patients ideally would be physicians who also have health conditions and who can post a personal experience video on YouTube®, for instance, that would not only be medically correct, credible and trustful but would also contain that first-hand experience that patients with a disease like IBD really crave and search for online.'"

The idea that we would need, or even want, a patient-MD to blog about every possible rare disease is just mind-bogglingly ... I don't know.

I'm so cranky I'm at a loss for words.

For one thing, rare diseases are... what? RARE.

What are the chances that a doctor actually has a particular rare disease in the first place?

While having a rare disease does tend to make you an expert in that disease, it doesn't necessarily make you a good communicator if you weren't one already.

And lastly, just because someone is an MD and has a white coat doesn't mean they can't be a quack, or unscrupulous, or any more or less trustworthy as a source than we, the patients, are.

grump, grump, grump.

1 comment:

  1. Dear Cranky Pants,

    Yeah, call me when they line up a real live physician diagnosed with SCAD . . .

    I'm just writing an article about a similar phenomenon, which is that of Big Pharma paying celebrities to help shill their drugs: e.g. Barry Manilow talking about his atrial fibrillation, courtesy of Sanofi, the drug company that makes the widely discredited MULTAQ, or Allergan-funded Brooke Shields flogging LATISSE, the prescription eyelash thickening agent. (Yes, there is such a thing, and this marketing campaign actually made it to the top of Forbes' "Top 10 Most Misleading Drug Ads" list last year!)

    The reason drug companies spend from $20,000 to $2 million on these celebrity "endorsements" is that their respective target markets DO pay attention. Consumers actually BELIEVE that Brooke really knows about drugs that claim to thicken our eyelashes, despite the fact that she leaves out the nasty bits about serious side effects (like unwanted hair growth on other body parts . . . )

    The reason Dr.Mukewar wants real live MDs to talk openly about their own rare disease diagnoses is likely based on the theory that consumers will BELIEVE a doctor more than a lowly run-of-the-mill little patient.

    Sadly, he may be right. Let's face it, there is so much unadulterated crap out there in the land of YouTube, Twitter, Facebook, patient forums, and Blog Land that many patients have no clue where to start, who to trust, or what to believe.

    THAT is why having your Mayo Clinic 'credentials' is SO important in getting both docs and patients to actually pay attention to your important message.

    Since graduating from the WomenHeart Symposium in 2008, I have been invited to speak to several groups of health care professionals (including staff in mental health, cardiology, E.R.) I know for a fact that these doors would have been firmly closed to me if I were merely just another (female) heart attack survivor.

    But that Mayo Clinic training lends instant street cred: not only are we real live survivors (like that fictional physician that Dr. Mukewar wants to serve as poster child for future rare disease awareness campaigns) but we also have trustworthy information to share that, in too many cases, is far more current than the knowledge of some physicians.

    But, also sadly, doctors prefer to listen to other doctors. When my blog post "When Doctors Become Patients" was picked up by the mega-site, it was slotted into the PATIENT subject category.

    But a few weeks later, when a similar article on the same topic but written by a real live DOCTOR was picked up, this one ended up in the far-more-widely-read PHYSICIAN category.

    Go figure. . .