Coping With Epilepsy Medikidz Comic Book Explains Epilepsy
Sponsored Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Library


Reply
 
LinkBack Thread Tools
  #1  
Old 03-20-2010, 05:43 PM
Bernard's Avatar
Your Host
Recent Blog: Oh poop

 
Join Date: Mar 2005
Location: Friendswood, TX
Posts: 5,727
Thanks: 155
Thanked 595 Times in 268 Posts

The Missing Voice of Patients in Drug-Safety Reporting


Originally Posted by Ethan Basch, M.D., New England Journal of Medicine :
A patient wants to know about symptoms she may have from a prescription drug she is taking. Consulting the label’s “Adverse Reactions” section, she finds a wealth of data. Little does she realize that this information, largely collected during clinical trials, is based almost entirely on clinicians’ impressions of patients’ symptoms — not on patients’ own firsthand reports of their experiences with the drug.

The current drug-labeling practice for adverse events is based on the implicit assumption that an accurate portrait of patients’ subjective experiences can be provided by clinicians’ documentation alone. Yet a substantial body of evidence contradicts this assumption, showing that clinicians systematically downgrade the severity of patients’ symptoms, that patients’ self-reports frequently capture side effects that clinicians miss, and that clinicians’ failure to note these symptoms results in the occurrence of preventable adverse events.1,2
...
http://healthcarereform.nejm.org/?p=3140

All the more need for folks to use MedWatch
__________________
Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback.

Would you like to help support this forum?

We recently had a bunch of new neurofeedback practitioners agree to offer CWE members discounts for service. See post #12 for the list of all participating practitioners.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
The Following User Says Thank You to Bernard For This Useful Post:
Cint (03-23-2010)
  #2  
Old 03-20-2010, 07:44 PM
RobinN's Avatar
Super Moderator / Super Mom
 
Join Date: Aug 2007
Location: SoCA
Posts: 7,475
Thanks: 61
Thanked 436 Times in 358 Posts
Send a message via Yahoo to RobinN
When Rebecca was on meds, I found Ask a Patient to be helpful.
__________________
Robin
Neurofeedback - Rebecca's Story
Feedback Matters- blog
Knowledge is power and knowledge shared is power multiplied.
-- Bob Noyce
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
The Following 4 Users Say Thank You to RobinN For This Useful Post:
Aubrey (03-20-2010), Birdbomb (03-21-2010), Endless (03-25-2010), Rae1889 (03-22-2010)
  #3  
Old 03-21-2010, 02:00 AM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 6,527
Thanks: 174
Thanked 1,510 Times in 1,312 Posts
Boy does this strike a chord! How many times have we heard someone say "my doctor says _____ isn't a side of effect of DrugX", and yet you find that everyone on the net has been complaining about _____. Obviously the drug companies have a stake in minimizing reports of side effects before drugs are approved, and tehn once the drugs are unleashed on the public there are few official ways to record and evaluate the resulting "real world" symptoms and side effects.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #4  
Old 03-21-2010, 02:33 AM
Birdbomb's Avatar
Super Moderator / VNS Guru
 
Join Date: Apr 2005
Location: Las Vegas, Baby!
Posts: 2,359
Thanks: 124
Thanked 173 Times in 99 Posts
It's even worse for medical implants because they monitor themselves as per the standard set down by the FDA! It's sickening and deceptive and HARMFUL not to disclose the true facts about medication or medical implants.
__________________




"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)

Work like you don't need money,
Love like you've never been hurt,
And dance like no one's watching.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #5  
Old 03-21-2010, 07:50 AM
Meetz1064's Avatar
Super Moderator / Fantastico
Recent Blog: Kindness is

 
Join Date: Oct 2007
Posts: 3,642
Thanks: 85
Thanked 209 Times in 192 Posts
Send a message via Yahoo to Meetz1064

Ya know


nothing really surprises me anymore about the medical industry. This just makes it sadder, to me.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #6  
Old 03-21-2010, 09:49 AM
Bernard's Avatar
Your Host
Recent Blog: Oh poop

 
Join Date: Mar 2005
Location: Friendswood, TX
Posts: 5,727
Thanks: 155
Thanked 595 Times in 268 Posts
Originally Posted by RobinN View Post:
When Rebecca was on meds, I found Ask a Patient to be helpful.
It's helpful for folks looking for validation/information, but it doesn't help correct the problem when one is experiencing an unacknowledged side effect. I'd encourage folks to use the MedWatch system and report side effects even when your doctor tells you it isn't caused by whatever medication you are taking.
__________________
Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback.

Would you like to help support this forum?

We recently had a bunch of new neurofeedback practitioners agree to offer CWE members discounts for service. See post #12 for the list of all participating practitioners.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #7  
Old 03-23-2010, 11:25 AM
Cint's Avatar
CWE Supporter
 
Join Date: May 2008
Location: Littleton, CO
Posts: 1,563
Thanks: 115
Thanked 366 Times in 279 Posts
I agree, Bernard.
And here is another website I find useful and informative:

http://www.pharmalot.com
__________________
"The Golden Rule is that there are no golden rules."
~George Bernard Shaw
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
Reply

Tags
fda

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Widespread off-label drug prescription raises safety concerns Bernard The Library 2 09-06-2009 08:46 AM
safety placemat Dutch mom The Nursery 2 05-05-2009 12:05 PM
Seizure-drug study to involve patients, medics in Glendale Heather Hamster Cage 3 04-30-2009 08:46 AM
Voice For The Uninsured batman The Library 0 09-25-2008 09:33 PM
safety Shelley The Lounge 1 11-25-2007 02:07 PM


All times are GMT -5. The time now is 10:49 PM.


Powered by vBulletin® - Copyright ©2000 - 2012, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 © Measuring Up. ALL rights reserved.