[reverett123]

At least they are paying attention, but I do wish they would shake off the damn lab rat mind set. It would have been nice to have been asked for comment or something, now wouldn't it?

1: Pharmacoepidemiol Drug Saf. 2007 May 8; [Epub ahead of print]

Drug related problems with Antiparkinsonian agents: consumer Internet reports
versus published data.

Schröder S, Zöllner YF, Schaefer M.

Institute of Clinical Pharmacology, Charité University Medicine, CCM, Berlin,
Germany.

PURPOSE: There is currently a lack of detailed information concerning drug
related problems in the outpatient treatment of Parkinson's disease. METHODS:
Problems associated with drug treatment communicated anonymously in Parkinson's
disease online forums were therefore retrospectively searched and documented for
1 year. RESULTS: Based on postings concerning 12 drugs for the treatment of
Parkinson's disease, a total of 238 drug related problems were identified and
categorised using the Problem Intervention Documentation (PI-Doc). Of these, 153
were adverse drug reactions. Adverse drug reactions associated with the skin were
relatively common, but central effects such as cognitive or psychiatric changes,
effects on the sleep/waking system and other problems like headache and dizziness
accounted for the highest percentage of adverse events. A comparison with data
from scientific literature revealed a number of differences. This means that an
analysis of online forums detected a number of drug related problems that were
otherwise largely invisible. These were mainly associated with the qualitative
aspects of treatment such as medication handling, dosage and individual problems
concerning adverse events. In addition, the described method of identifying and
classifying drug related problems in Internet forums may also be seen as a
contribution to the international discussion about consumer reports and
pharmacovigilance. The information about adverse drug reactions given by Internet
users can be seen as a valuable adjunct to clinical trial data and as being very
timely with regard to the event itself. CONCLUSION: Online forums may be
considered as a suitable source of observational information to complement data
from randomised clinical trials. Copyright (c) 2007 John Wiley & Sons, Ltd.

[jeanb]

yep - i've always figured that some drug company folks come & lurk.

thanks for this.

[oyster]

hey! maybe i could get a job reading this forum!

[paula_w]

Haha good one oyster.

Originally, it was a no no in the medical community to take anyone seriously on the internet. Ten years has turned it around.

paula

[Suffolkchris]

A Neurologist suggested to me recently that it was widely suspected that some drug companies were using PD Forums to promote their drugs through Postings by planted members. I know this Forum is closely moderated and administored but not all are!

[Curious]

Originally Posted by Suffolkchris

A Neurologist suggested to me recently that it was widely suspected that some drug companies were using PD Forums to promote their drugs through Postings by planted members. I know this Forum is closely moderated and administored but not all are!

we really try and watch for stuff like that.

most are pretty obvious. we catch the spammers and such pretty darn quick.

[jeanb]

Woo hoo!! You guys are GOOD!!

thanks!

[vlhperry]

Are they monitoring to improve their product or to use the information to produce more copycat drugs that may not have the forums' ratings as too many side effects? I have no trust in pharmaceutical companies. For those companies reading this, if the survey read :

How would you rate our pharmaceutical industry in terms of effectively producing innovative products, on a scale of 0 being no trust and 5 being very trustworthy, My responce would be a big fat 0.

How could we improve? Simple, first no lobbying of congressional persons either Federal or State, Stop Advertising drugs on TV, ( do you really think the public is stupid enough to believe the actress who while talking to her friends listing all potential side effects of a drug didn't memorize the lines you wrote for her?) Generally after hearing the side effects, your product is a turnoff.

No more cover ups by releasing research information about new products on a "What the Public Needs to Know" while leaving out the some serious side effect to rush your product to the market.

Stop using patients for research only to look for information or responces from the participants proving your brand name drug is better than someone elses that does the same thing. This type of research does not help the patient to derive information about the disease under study, but is strictly for marketing purpose. Don't hand them your typical research contract stating the patient should not expect to receive anything, the research is to be used for the interest of science. Try the truth for a change. Tell the patient it is for marketing purposes and offer him a cut of the increase in revenue the study makes.

Finally, under no circumstances should you even contemplate getting patents on gene information found from patients volunteering blood. The blood they donated is nature and cannot be patented. The intention of the patient participating in gene research is to benefit all mankind, not to give your company the right to buy the rights to the information and patent it. Patents of gene lines will only slow the research process and empower the larger drug companies to squash the growth of smaller independent research by not allowing them to research a gene line which may cause a secondary effect on another disease.

Got It You Lurkers?
Vicky