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Patients-like-me website is for Pharma

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Old 10-19-2010, 08:58 PM #11
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Things my insurance company would like to know:

* Condition/disease information, including diagnosis date, first symptom information, and family history
* Treatment regimens, including treatment start dates, stop dates, dosages, and side effects
* Symptoms experienced, including severity and duration
* Laboratory results (e.g. CD-4 count, Viral Load)
* Biographical information, including photo, bio, gender, age, location (city, state & country), and general notes
* Genetic information, including information on individual genes and/or entire genetic scans

In other words, everything you’d need to specifically identify an individual patient except for their name. And you can get their name by hiring PeekYou, a service that uses this system to reverse-engineer personally identifying information from “anonymous” user information — such as passwords* screennames, family names and dates of birth — commonly found all over the web.
-Jim Edwards
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Old 10-19-2010, 09:24 PM #12
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gee.. sounds like things we talk about in here. sounds like things my doc also would like to know. i am sure there are many blog sites such as facebook that a person would reveal as much. i am with laura. what's the big deal? seems a tad of paranoia is involved here. should i get up and leave the stage, or sit and see where this goes..maybe i will just turn off the tv and puter and go live my life.
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Old 10-19-2010, 09:26 PM #13
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Just because I'm paranoid, doesn't mean they're not after me......

I could see them harvesting any evidence of adverse reactions to meds, or info to use in future litigations.
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Old 10-19-2010, 09:31 PM #14
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Originally Posted by Conductor71 View Post
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
add a hot tub and a bottle of reisling to that PD Club Med laura.. lol
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Old 10-20-2010, 01:08 AM #15
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bob,

you crack me up. I enjoy your easy going, flexible, but consistently interesting posts, and sense the comedian just below the surface. ok don't want your head to swell but thanks/

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Old 10-20-2010, 09:51 AM #16
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bob,

you crack me up. I enjoy your easy going, flexible, but consistently interesting posts, and sense the comedian just below the surface. ok don't want your head to swell but thanks/
Oh, Paula, your kindness and tolerance toward me is already legendary. I would have been kicked off any other site long before now, and the last post would have been a photo of me with an editorial saying "This man has no alibi".
I will, however, pay more attention to the Fields of Fire and choose my battles more carefully, instead of going through the roof everytime I hear the word "Pharma".
Groups of children follow me in the street, chanting "Pharma, Pharma, Pharma", just for the fun of watching me break something.
That's always a sign that i need to get rid of some of my old clichés and replace them with new clichés.
I vow I will not touch a drop of Pharma for the rest of this month.
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Old 10-20-2010, 11:17 AM #17
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i won't tell you what I heard on tv this morning then. i'm tempted to make a wager that you will indeed mention them but it would be too easy - don't want to steal your money.

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Old 10-20-2010, 11:24 AM #18
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i won't tell you what I heard on tv this morning then. i'm tempted to make a wager that you will indeed mention them but it would be too easy - don't want to steal your money.
tell me tell me tell me
it's hunting season in Quebec and we are swinging our chainsaws at every leaf that trembles
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Old 10-20-2010, 12:15 PM #19
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"It is not in hearing of a thing one time that we can understand it. We must hear of it many times to understand it."

- e-mail from a Shaman

(via Bob Dawson)
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Old 10-20-2010, 04:05 PM #20
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Quote:
Originally Posted by Bob Dawson View Post
tell me tell me tell me
it's hunting season in Quebec and we are swinging our chainsaws at every leaf that trembles
http://www.reuters.com/article/idUSTRE69I3PO20101019

just being reiterated by someone - who knows what the purpose for the article is? it's not breaking news - i just used it to tease you.

are there people in civilized countries who don't know that doctors are given "gifts" and in return the doctor uses their product, It's not illegal.

wonder what the scots do about conflict of interests. or the UK in general?

by law, patients can't be around the pharmaceuticals amd we were not prmitted to enter their exhibits hall

They said patients try to buy drugs there.....i'm a little confused about it.maybe bryn, grey , swept or Tom can say more.


The article is old news just continuing. Not worth breaking a vow over. I would love to hear from those in the UK or anwhere outside the USA about their experiences with pharmas. How aware are they of the extent of the conflcits of interest., and activists involved.

We should fundraise madly to make our own trials and treatments. All we need is a billionaire who wants to cure this illness.......hmmm

maybe we should look toward the oil companies. or work with NASA.

http://www.reuters.com/article/idUSTRE69I3PO20101019
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