Accuracy of information from an internet breast cancer list

thenewme

I believe there IS potential harm in misinformation. 

As a real breast cancer patient, I came to BCO for information, and I'm intensely grateful for all that I've gained here (information, suggestions,  friendships, etc).  Lately I've been noticing a rash of misinformation being posted here, and that bothers me.  I  keep seeing people claiming that nobody would base medical decisions on internet posts, but we see it all the time here! 

That's why I do my part to provide facts and refute misinformation, and it's also why I'm grateful when information I post is discussed and corrected if necessary.  We all deserve accurate information to base our choices on.  

Accuracy and self correction of information received from an internet breast cancer list 

" Nearly half of women recently diagnosed as having breast cancer turned to the internet for information on health.1 Consumers are satisfied with their online experience and are making choices based on the information that they encounter.2,3 In some cases patients may not discuss with clinicians their use of treatments found online.4 On the other hand, clinicians are faced with patients who have been informed (or misinformed) by information posted on the internet. Clinicians, researchers, and healthcare consumers are therefore concerned about the accuracy of online health information.2,5-7.....Given a sufficiently active forum, participants can identify and correct most false or misleading statements quickly and reliably without requiring professional review.  Online forums can police themselves"

Anonymous

When Docs Get Annoyed At Empowered Patients

Dr. Rankin on CNN article regarding doctors annoyed with patients                                    Published on July 19, 2011 by Lissa Rankin, M.D. in Owning Pink

"...Doctors, who get annoyed by patients who ask questions, second guess them, read stuff on the internet, and make their own decisions based on their own gut instinct, need to get off their high horses and get over themselves..."

READ MORE: When Docs Get Annoyed At Empowered Patients | Psychology Today

rosemary-b

From the OP

Given a sufficiently active forum, participants can identify and correct most false or misleading statements quickly and reliably without requiring professional review.  Online forums can police themselves"

thenewme

LOL, that's only half the story, though!

The other side consists of patients who go to their doctor demanding this or that treatment or medicine because they read on the internet that it cured whatever ailment!  Or those who refuse recommended treatments and want the doctor to cure them anyway.   Or those who don't bother to schedule a special appointment to discuss concerns outside of the normal 10- or 15-minute appointment (some patients try to "slip in" a discussion about all the pros and cons of some complicated issue like breast cancer during a quick throat culture visit, for example).

In my experience, my doctors have been very welcoming and appreciative of my outside research and informed questions.   Of course I'm respectful of their time and expertise and they're respectful of mine.

elimar86861

thenewme,  That's all true enough.  It is a real service to clarify or correct misinformation when you find it, but you can only do so much.  You can't be everywhere the information flows, and sometimes there is even a grey area of truth to the information you read, where black and white intersect. 

The internet is a tool.  Like a paintbrush is.  You can hand one to Michaelangelo and get one result or hand it to a zoo primate and get another, and both wind up smugly happy with their "masterpiece."

I have to agree with what princess123 posted, since it does not look like the internet is going away, that clinicians may actually have to talk with and not down to patients, may have to explain themselves further, may be required to educate their patients more than ever before.  While they were busy being all paternalistic, someone snuck up and rewrote their job description.  It's a new dawn, it's a new day, and all that.

I now have doctors ask me to print up and bring in what I have read on the internet regarding what I ask them about, and they will read it over like they are fact-checking.  I love that.  It opens the door to us having a concensus view, or to further discussion and better understanding of each other's viewpoint.   Most times, just in a regular office visit, the doc comments on how "informed' I am.  Could be flattery, but why?  They don't work on tips.

princess123,  Great quote!

thenewme

Hi Elimar, I missed your response.  I agree that the internet is a tool, but I'm not convinced about the paintbrush analogy.  I'm not sure what real harm a paintbrush could inflict on a person.  I think the internet is an enormously powerful tool, but I also see the potential for the downside.

I do agree, though, that times are changing and  doctors will be expected (and rightly so!) to interact with patients increasingly armed with more information, both good and bad, gleaned from the internet.

Again, in my experience, my doctors are very open to discussing  my questions and concerns, including things I've come across online. Sounds like your doctors are too!

ETA-I totally agree about the "gray zone" and the fact that one person can only do so much, but I like to do what I can.

elimar86861

Ha!   You can re-read the analogy and substitute "chainsaw" for paintbrush, if you want some danger...Like one will buzz out a totem pole with a chainsaw, while another will saw his arm off.   Eeew!  Not as funny that way.