[Bob Dawson]

Jim Edwards at Placebo Effect (CBS) blows another one out of the water.... kaBOOM!

“…But don’t kid yourself that PatientsLikeMe is the victim here: Its entire business model is about selling private patient information to the highest bidder…”

“…What the article doesn’t make clear is that PatientsLikeMe makes its money by persuading patients to give up the kind of private data that once rested securely in a locked filing cabinet in your doctor’s office…”

“…its clients are drug companies who want to know what patients say about their drugs when they’re not around….”

http://www.bnet.com/blog/drug-busine...awer-container

[pegleg]

Yup - I requested that they remove all evidence that I had ever visited there. (and you have to do that by request only)

Peg

[paula_w]

....in PLm. Never completed a profile...i can recall going there and thinking too much work.It sounds like a different setting and to each his own. Do the patients go in knowing their information will be sold? That was news many years ago. But one pwp did say, "they don't tell you that tho."

Lots of heresay, this forum is the only one I'm interested in.

[Bob Dawson]

And maybe there is some model whereby a total sharing of information would speed things up, but Pharma never tells us anything; the truth about Merck's sinemet shortage is "proprietary information" that we are not allowed to know, the disappearance of Schering-Plough (who did a lot of PD research) was done behind a huge smoke-screen; we are kept out of meetings and have to research information for ourselves...some PD researchers refuse to share their information, even with other scientists, and certainly not with mere patients.

Meanwhile Pharma and insurance companies and who knows who else are ripping off our most private information, included photo and address, by setting up a website that claims it is for patients like me.

It's always a one-way street; here is a fine example. They data mine what we say; we are not allowed to know about them. It is a fine example of the attitude of large segments of the quasi-legal drug trade.

They do say on their site that they are selling info - claiming it is accumulated statistics and not personal. But Jim Edwards shows they can get your name, your address, just about everything except the name of your dog, which they will soon want too, as some of Big Pharma is making a fortune now on drugs for your pets.

[Fiona]

Originally Posted by Bob Dawson

“…its clients are drug companies who want to know what patients say about their drugs when they’re not around….”

http://www.bnet.com/blog/drug-busine...awer-container

HaHaHa- I'll tell them what I have to say right here for free! And hello there, Pharm Boys, it ain't good. Can you spell pharmaceutical slavery?

Ok, back to thinking positive thoughts only, I promise.

[Bob Dawson]

Originally Posted by Fiona

HaHaHa- I'll tell them what I have to say right here for free! And hello there, Pharm Boys, it ain't good. Can you spell pharmaceutical slavery?

It is fun, in a Monty Python sort of way.
They are paying spies to spy on us and to steal the information from a free public website.
“Sir, the spies say there is much more free information at Neurotalk, and the people there would be glad to talk about it and find out what you need to know….”
..”Good, go to their website and steal all their postings..”
“… ah, sir, it’s all free..”
“>.. I don’t care what it costs, go and spy on patients like you..”
“… like me, sir. Patients like me.”
..”What, are you a patient there?”
..”Umm, no sir, but I am concerned that people mock us openly on the tennis court when they find out we spy to scrape information from PWP who have been shouting for years and nobody listens to them….”
…’They drive a hard bargain, those PWP. We need to tap their phones to find out what they REALLY think about the new cherry-flavored Mirapex in bubble gum format, with the coupons you can save up to get really neat gifts and all…”
…” Ahh, Sir, that format does not exist, it was a bent joke…”

[indigogo]

Just to chime in that I've always been wary of the site because of its relationship to Pharma. I think I established an identity there when it first started, but it's been years since I have visited .....

[stevem53]

So thats why they pm-ed atleast 3 times and asked me to fill out all this medical profile crapola..I never bothered doing it..They were asking for too much info

[harley]

bashing another site isn't justifiable imho... (gee, i wonder why i feel this way?) unless there is solid proof that the sole purpose of plm was to feed pharma. this internet highway goes at top speed and people fly in and out of these sites under radar. i KNOW how poisonous words can destroy something that was originally built for good intentions- ever hear of parkinsonprofile? used to be parkiejam. (since we are naming names now). this is not the only site that has suffered from behind the scenes political ******** and the only one i will mention because i was involved personally. i do know of other sites that have been sent downstream without hope because one person or another developed a grudge against someone, became power hungry and siezed an opportunity that was attainable by cut-throat actions that were easily hidden after the fact, or began gossip which started as a small ripple within the parkie community and ended in a huge out of preportion titalwave which sent them out to sea.

i say let plm say their side. but, will they? will anyone listen to them after this?

so stupid.. we are all fighting this huge thing called "PD". do we really have to fight each other? geez.

[Conductor71]

Let's put our emotions aside and view this objectively. Pharma may very well indeed be gleaning info from PLM, but frankly...some things just don't make any sense.

What in the heck are they doing with the info? It's not like they are pushing some novel new treatment on anyone. Remember, it's been 50 years and we're still using l-dopa, so frankly if a pharma wanted to be innovative and set our world on fire, I say go for it, use my info. Take it and run.

Why would they "spy" on us through data collection on a forum when they just diss us in clinical trials? In other words, by saying that they want our info so badly, they'll "buy it" implies that they care about us. I don't hear anyone saying that their feelings, opinion or experiences ever mattered in that process. Why would they surreptitiously want this information from the AOL of e-medical forums?

I guess if I could come to a logical conclusion as to how they would profit from this info, I would be concerned, but I can't see how they would possibly gain anything of great value to their missions or goals. Now on the other hand, I could see the site being used to target alternative markets to traditional drug therapy...see where it is failing PWP and step into lure them away, but to what? I'm all for a PD Club Med with a bar in the pool and cute cabana boys willing to rub my dystonic foot, all of course, billable to insurance, but I can't see that happening. Maybe in five years?

Laura