Question:
I recieved a phone call from someone asking if i would take a phone survay about P. She told me i would recieve a check for $10.00 if i agreed...so i said ok.
She wanted to ask about the injectables and if i ever tried them and if i had ever ask my Derm. for them.
She went through the entire list of injectables ...asking why i havent tried them....if i would be interested in trying them...if my Derm had offered them to me as a treatment...where i heard about them...if i belonged to any online support groups like the NPF....if i ever attended any seminars about them...and on and on about why i didnt want to go on them.
Have any of you got calls like this one? I didnt think to ask her what company she was from.
Does the NPF give out our personal info to drug makers? Is the NPF getting something out of this survay...like "kick back"..for referring us for them to call us? I have never gave permission for NPF to share my info with ANYONE ...this includes drug makers.
So ...let me know if any of you got a call like this. And i want to know if NPF is giving [or selling] our personal info to 3rd parties. If so...I feel betrayed by NPF...If so...shame on you!!!
linda
Nope, only got one about when I was on Enbrel and it was about what my experience on Enbrel was like.
I doubt the NPF gave out the info, They dont even give out my info about studies coming up, I generaly get a letter from them saying they are looking for people in my area and if I was intrested how to contact them. They also say that they are just passing the info along and that they do not endorse or encourge the study just that they are passing the info along.
Could have been your Derm, or possably any Pharmacy you ever got P meds from. I would most likely say it was a piece of Spyware or Ad-aware that got on your computer, kept track of your Internet browesing. Recorded that you visited a fair number of P related sites and passed it along.
As an IT guy for a multi-national company and I can tell you I have run into some nasty pieces of spyware. We started getting advertisements and calls to our support department all over the place all of a sudden and it turned out those monkeys. ;) were using plain old Microsoft internet explorer and there systems were full of spyware. After hours of cleaning and trying to track down rouge .exe and browser hijackers. I got them all, (I hope) had to re-install one that was so nasty I couldnt get the thing off.
So this is just to say your info could have come from anywhere. Why would you think The NPF did it? and if your so insulted by them having your info why didnt you ask them how they got your info instead of taking the $10? :)
-Fox
NPF has stated in their privacy policy that they never give out personal information of its members to any third party. Quoted from the NPF privacy policy:
"The Psoriasis Foundation's Privacy Policy promises that personal information, including the data transmitted between computers, paper records and membership information will only be used to better serve Psoriasis Foundation Members and the public. The Psoriasis Foundation does not release Members' or ex-Members' information to any person, organization or company for any reason, at any time."
The full privacy policy can be read here:
Anyone who requests more information from a third party site, such as a pharmaceutical site, may be inadvertently giving their information for surveys such as the one you received. It is always a good idea to read a web site's privacy policy before providing any personal information if you don't want to receive information from that site, affiliated sites, or third party sites.
Jody
i did not say i was insulted.... and $10.00 will buy another tube of medicine ...and if i am going to sit there and answer questions for 1/2 hour...why not take the $10.00?
My first thought was i might be able to help someone with my answers...but all they wanted to know was about the biologics.
It was after the call that i started wondering about how she got her info...the NPF was a logical place to wonder if they gave out the info...
FYI...i didnt talk to her for the money..
linda
I have done a survey fro Psoriasi about five years ago for some over the counter products. I went to a office in Ft. Lee (outside NYC) and try several differnet lotions and ointments. Along with the trial I took a survery on living with psoriasis. I remember getting 100 bucks for my time and effort.
mitch
It was from TMC marketing or something like that, I can't remember for sure. I asked them who had hired them to conduct the survey and they would not release that information so I asked them why do you think I would give you any information if you won't share yours. I did not participate.
I recieved a phone call from someone asking if i would take a phone survay about P. She told me i would recieve a check for $10.00 if i agreed...so i said ok.
....
So ...let me know if any of you got a call like this. And i want to know if NPF is giving [or selling] our personal info to 3rd parties. If so...I feel betrayed by NPF...If so...shame on you!!!
linda Hmmm Yes I have been a willing participant of PS phone surveys. As a patient using Enbrel, I agreed upfront to provide information about my experiences. As far as the NPF selling personal information, I doubt it. There are two reasons why the NPF would not partake in this practice. First it is unethical and second it is illegal.
My thoughts are that the ethics displayed by the NPF are beyond reproach, and I for one cannot imagine that the NPF would be so hard up for a pittance of funds that they would risk losing their non-profit status. Perhaps some other group or individuals trying to raise money is the culprit? Be careful with whom you share your personal information.
My first thought was i might be able to help someone with my answers...but all they wanted to know was about the biologics.
Just out of curiosity but would you have made this same post, if say they asked you about topicals you had used. Or perhaps your option on a number of Alt. treatments for P or if you Drem had ever suggested or offered Alt. treatments?
I only ask that becuase the inference of your statment above makes it sound like your saying Biologics dont help people.
Sorry about the Money line, I should have worded that better.
Also the question "Are you a memeber of any online groups like the NPF?" would seem kind of redundent to ask if they got the info from them.
-Fox
hi linda,
sorry i can't help much. the only calls i got are from polly, mike and my mom. not many people like to talk to me. darn it :D :D :D
have a good night my friend
richard
Why not simply ASK the NPF???
Nancy
Perhaps I can help to shed a little light on this matter. I also revieved a phone call. Having caller idea, it was from Intersearch Corp. (1-215-442-7094). The caller did mention that if I completed the survey I would receive $10.00. The caller asked me if I was diagnosed with psoriasis, I said yes. Then he asked if I was diagnosed with psoriatic arthritis, I said yes. He then asked if my P/PA was mild, moderate or severe. I told him I was once severe but was currently in remission. He thanked me for my time and ended the survey there, not mentioning biologics at all.
I am registered with SkinCell and Psoriasis Support, just the NPF. I have completed other surveys as well. Their list could have been obtained from any of these.
Annie
(1-215-442-7094)
Same people that called me this weekend. Called me on Saturday and Sunday. I didn't answer the call Saturday and they did not leave a message. My only problem with the survey is that they would not disclose who they were hired by to conduct it. Stuff like this should be out in the open, not some hidden secret.
I received their call last Sat. about 5 PM ET & they ask me just about everything that you can think of concerning p, pa, and treatments used. They said they were calling from Indiana, Pennsylvania. I figured that 10 bucks for about 15 minutes was OK with me. And, who know, maybe some of my answers would help somebody.
The National Psoriasis Foundation takes the privacy of its members seriously. We do not sell or give our members names to drug companies. We did not conduct this survey. These questions are not ours. We can assure you that this survey did not come from the Psoriasis Foundation.
The Psoriasis Foundation does conduct its own survey research. For more information about our programs, please see
I think I know how someone got my personal info. About 2 weeks ago my DH and i went to an Amevive seminar. The only paper i signed was a form for them to check my insurance to see how much they would cover.
I bet you anything that somewhere...buried down at the bottom..in tiny print...was a concent to share my info and who knows...maybe an aggrement to take survays...
So ...has anyone who got these calls recently attended an Amevive seminar?
linda
Went to the company’s web site. Here is the link
I tried contacting them but they referred me to there privacy policy. Basically they don’t give out customer’s info. And basically they don’t have to give out that info and I don’t have to take their survey. Of course I didn’t say they ever called me to take it.
I would guess from how Annie call went they are either a company looking for current market share. If she is not taking it, then they don’t need to ask her much. On the other hand and being in remission probably would be looking to use one soon. Could be for a medical research but I would doubt that if there are paying most of those say up front this is a medical survey and just ask for you to do it without paying for the time.
Were I luck out, I am now working on my Math Thesis for my masters and don’t need info like this, But I know a Woman at school who is a Political Science major and she paid to have a survey done to use the results in her thesis. Personally I would have just found a study online and quoted it but I highly doubt this was done by anyone doing anything like this.
I checked my phone being busy with school its possible I could have missed it, but I have no calls from the 215 area code in the last week or so.
Next problem would be even if they did tell us who contracted out the survey; you would have to figure out how that got that info. Though knowing the company in question would make it easier to figure out 'how'?
-Fox
I used to work in a doctors office, so i have an inside view of what drug companies do. they offer dr's dinners, weekend trips, etc for BASIC info on pt's to conduct drug surveys. You guys might want to try asking your dr or the staff there the policy on wether or not they participate in these things.
a.
I used to work in a doctors office, so i have an inside view of what drug companies do. they offer dr's dinners, weekend trips, etc for BASIC info on pt's to conduct drug surveys. You guys might want to try asking your dr or the staff there the policy on wether or not they participate in these things.
a.
Did you work there before or after HIPAA Reform?
I highly doubt any doctor in this day in age is sharing any patient information without your consent.
I work in a doctor's office. I am married to a doctor. I worked in the Operating Room for 35 years. I am well educated regarding HIPPA regulations and patient's rights. Doctor's do not and cannot not give drug companies any information, BASIC or not, about their patients. It is illegal!!!
It is legal for a drug company to work with a doctor to research a new drug or a drug which is already on the market. In order to do this, the doctor and the staff are educated and under constant supervision by a representitive of this company. The doctor's credentials, experience and background are checked before he is elligable to participate in any study. The entire study is performed under STRICT FEDERAL guidelines. AND..... any patient involved in the study is aksed to do so only after being thoroughly explained to about the study. The patient needs to sign legal release forms.
Actress, you must have worked in a doctor's office prior to the reforms that have been initiated by the federal government regarding the dinners and trips that doctors can no longer take and drug companies are forbidden to provide.
Dh and I just spent $2,100.00 of our own money to attend a surgical workshop. My husband attended every lecture in order to keep himself up on the latest findings in Urology. Why do you suppose he did that? I'll tell you! He wants to give his patients the best care possible. We were brought ought to dinner once, however the drug rep is a personal friend of ours and insisted on taking us out as we were in his city. When he's in town WE pay for dinner.
I am glad to see that the NPF came forward to dispell any rumors regarding it's involvement in this mysterious survey. IMHO, the NPF has the most honorable and professional reputation of all the psoriasis sites I have visited or that I belong to.
Sorry this was a bit long winded but there was a common misconception that sorely needed correction. I would like anyone who still feels that docs are living the high life off of drug companies, etc.; to live one day in my dh's life. He is in the operating room all day today. And everytime he takes that knife in his hand his heart is in his throat and he prays. Consider his awesome responsibility. I do. I respect and love him. And I've obviously been insulted and upset by the statements made here.
Annie
I used to work in a doctors office, so i have an inside view of what drug companies do. they offer dr's dinners, weekend trips, etc for BASIC info on pt's to conduct drug surveys. You guys might want to try asking your dr or the staff there the policy on wether or not they participate in these things.
a.
I was involved in an entertainment business oh lets say about 10 years ago. We would sell a service for a group. Anyways at least twice per year a drug rep, not sure of the company, would hire our facility to educate doctors on our drugs.
These events were well over $1,000.00 each and were paid for by the drug company. In addition, food was also brought in for the event. Sometime during the entertainment they would take a break and the drug rep would start talk chemistry with these doctors. This would be for a group of about 10 docs.
Hey Annie, maybe your DH isn't looking for the right deals that are being offerred, i'm not sure how common stuff like this is but they certainly used our services more than once.
My dh and the thousand of other reputable doctors are not looking for deals but are looking to practice medicine. When the insurance companies deny treatments, drugs and equipment; it is people like my dh who spend unreimbursed hours on the phone every day fighting for their patients. I sort of wish my dh was a derm who specialized in psoriasis. I could just see him now arguing for treatments like he argues for treatment for his prostate cancer patients, his patients with chronic incontinence. What I am trying to say here is that the insinuation that most docs participate in this supposed illegal behavior is no different than saying every cop is on the take, or every politician is corrupt, every teen uses drugs or every priest is a molestor. Of course every group has their bad apples. The truth is most docs don't have time to partake in the bull. What little time left they have after finishing their long days goes to making it up to their families.
Please reflect on what the majority of docs do for us. They save our lives. There is a team of docs doing that right now for someone I know who is dying. She is young, my age. Not a patient, someone close to my loved ones.
Respect and tolerance, some wonderful ideals to live by.
With Love,
Annie
Annie, very well said!!! I agree with you 150%. We have a good friend who is a neurologist. I would not take his job for all the money in the world. In fact, I don't know how he can do it day in and day out.
Sorry to hear about your friend. My prayers are with you...
Nancy
Thanks Nancy, I needed that more than you know!!!!!!
XOXOX
Annie
She wanted to ask about the injectables and if i ever tried them and if i had ever ask my Derm. for them.
She went through the entire list of injectables ...asking why i havent tried them....if i would be interested in trying them...if my Derm had offered them to me as a treatment...where i heard about them...if i belonged to any online support groups like the NPF....if i ever attended any seminars about them...and on and on about why i didnt want to go on them.
Have any of you got calls like this one? I didnt think to ask her what company she was from.
Does the NPF give out our personal info to drug makers? Is the NPF getting something out of this survay...like "kick back"..for referring us for them to call us? I have never gave permission for NPF to share my info with ANYONE ...this includes drug makers.
So ...let me know if any of you got a call like this. And i want to know if NPF is giving [or selling] our personal info to 3rd parties. If so...I feel betrayed by NPF...If so...shame on you!!!
linda
Answers:
Nope, only got one about when I was on Enbrel and it was about what my experience on Enbrel was like.
I doubt the NPF gave out the info, They dont even give out my info about studies coming up, I generaly get a letter from them saying they are looking for people in my area and if I was intrested how to contact them. They also say that they are just passing the info along and that they do not endorse or encourge the study just that they are passing the info along.
Could have been your Derm, or possably any Pharmacy you ever got P meds from. I would most likely say it was a piece of Spyware or Ad-aware that got on your computer, kept track of your Internet browesing. Recorded that you visited a fair number of P related sites and passed it along.
As an IT guy for a multi-national company and I can tell you I have run into some nasty pieces of spyware. We started getting advertisements and calls to our support department all over the place all of a sudden and it turned out those monkeys. ;) were using plain old Microsoft internet explorer and there systems were full of spyware. After hours of cleaning and trying to track down rouge .exe and browser hijackers. I got them all, (I hope) had to re-install one that was so nasty I couldnt get the thing off.
So this is just to say your info could have come from anywhere. Why would you think The NPF did it? and if your so insulted by them having your info why didnt you ask them how they got your info instead of taking the $10? :)
-Fox
Answers:
NPF has stated in their privacy policy that they never give out personal information of its members to any third party. Quoted from the NPF privacy policy:
"The Psoriasis Foundation's Privacy Policy promises that personal information, including the data transmitted between computers, paper records and membership information will only be used to better serve Psoriasis Foundation Members and the public. The Psoriasis Foundation does not release Members' or ex-Members' information to any person, organization or company for any reason, at any time."
The full privacy policy can be read here:
Anyone who requests more information from a third party site, such as a pharmaceutical site, may be inadvertently giving their information for surveys such as the one you received. It is always a good idea to read a web site's privacy policy before providing any personal information if you don't want to receive information from that site, affiliated sites, or third party sites.
Jody
Answers:
i did not say i was insulted.... and $10.00 will buy another tube of medicine ...and if i am going to sit there and answer questions for 1/2 hour...why not take the $10.00?
My first thought was i might be able to help someone with my answers...but all they wanted to know was about the biologics.
It was after the call that i started wondering about how she got her info...the NPF was a logical place to wonder if they gave out the info...
FYI...i didnt talk to her for the money..
linda
Answers:
I have done a survey fro Psoriasi about five years ago for some over the counter products. I went to a office in Ft. Lee (outside NYC) and try several differnet lotions and ointments. Along with the trial I took a survery on living with psoriasis. I remember getting 100 bucks for my time and effort.
mitch
Answers:
It was from TMC marketing or something like that, I can't remember for sure. I asked them who had hired them to conduct the survey and they would not release that information so I asked them why do you think I would give you any information if you won't share yours. I did not participate.
Answers:
I recieved a phone call from someone asking if i would take a phone survay about P. She told me i would recieve a check for $10.00 if i agreed...so i said ok.
....
So ...let me know if any of you got a call like this. And i want to know if NPF is giving [or selling] our personal info to 3rd parties. If so...I feel betrayed by NPF...If so...shame on you!!!
linda Hmmm Yes I have been a willing participant of PS phone surveys. As a patient using Enbrel, I agreed upfront to provide information about my experiences. As far as the NPF selling personal information, I doubt it. There are two reasons why the NPF would not partake in this practice. First it is unethical and second it is illegal.
My thoughts are that the ethics displayed by the NPF are beyond reproach, and I for one cannot imagine that the NPF would be so hard up for a pittance of funds that they would risk losing their non-profit status. Perhaps some other group or individuals trying to raise money is the culprit? Be careful with whom you share your personal information.
Answers:
My first thought was i might be able to help someone with my answers...but all they wanted to know was about the biologics.
Just out of curiosity but would you have made this same post, if say they asked you about topicals you had used. Or perhaps your option on a number of Alt. treatments for P or if you Drem had ever suggested or offered Alt. treatments?
I only ask that becuase the inference of your statment above makes it sound like your saying Biologics dont help people.
Sorry about the Money line, I should have worded that better.
Also the question "Are you a memeber of any online groups like the NPF?" would seem kind of redundent to ask if they got the info from them.
-Fox
Answers:
hi linda,
sorry i can't help much. the only calls i got are from polly, mike and my mom. not many people like to talk to me. darn it :D :D :D
have a good night my friend
richard
Answers:
Why not simply ASK the NPF???
Nancy
Answers:
Perhaps I can help to shed a little light on this matter. I also revieved a phone call. Having caller idea, it was from Intersearch Corp. (1-215-442-7094). The caller did mention that if I completed the survey I would receive $10.00. The caller asked me if I was diagnosed with psoriasis, I said yes. Then he asked if I was diagnosed with psoriatic arthritis, I said yes. He then asked if my P/PA was mild, moderate or severe. I told him I was once severe but was currently in remission. He thanked me for my time and ended the survey there, not mentioning biologics at all.
I am registered with SkinCell and Psoriasis Support, just the NPF. I have completed other surveys as well. Their list could have been obtained from any of these.
Annie
Answers:
(1-215-442-7094)
Same people that called me this weekend. Called me on Saturday and Sunday. I didn't answer the call Saturday and they did not leave a message. My only problem with the survey is that they would not disclose who they were hired by to conduct it. Stuff like this should be out in the open, not some hidden secret.
Answers:
I received their call last Sat. about 5 PM ET & they ask me just about everything that you can think of concerning p, pa, and treatments used. They said they were calling from Indiana, Pennsylvania. I figured that 10 bucks for about 15 minutes was OK with me. And, who know, maybe some of my answers would help somebody.
Answers:
The National Psoriasis Foundation takes the privacy of its members seriously. We do not sell or give our members names to drug companies. We did not conduct this survey. These questions are not ours. We can assure you that this survey did not come from the Psoriasis Foundation.
The Psoriasis Foundation does conduct its own survey research. For more information about our programs, please see
Answers:
I think I know how someone got my personal info. About 2 weeks ago my DH and i went to an Amevive seminar. The only paper i signed was a form for them to check my insurance to see how much they would cover.
I bet you anything that somewhere...buried down at the bottom..in tiny print...was a concent to share my info and who knows...maybe an aggrement to take survays...
So ...has anyone who got these calls recently attended an Amevive seminar?
linda
Answers:
Went to the company’s web site. Here is the link
I tried contacting them but they referred me to there privacy policy. Basically they don’t give out customer’s info. And basically they don’t have to give out that info and I don’t have to take their survey. Of course I didn’t say they ever called me to take it.
I would guess from how Annie call went they are either a company looking for current market share. If she is not taking it, then they don’t need to ask her much. On the other hand and being in remission probably would be looking to use one soon. Could be for a medical research but I would doubt that if there are paying most of those say up front this is a medical survey and just ask for you to do it without paying for the time.
Were I luck out, I am now working on my Math Thesis for my masters and don’t need info like this, But I know a Woman at school who is a Political Science major and she paid to have a survey done to use the results in her thesis. Personally I would have just found a study online and quoted it but I highly doubt this was done by anyone doing anything like this.
I checked my phone being busy with school its possible I could have missed it, but I have no calls from the 215 area code in the last week or so.
Next problem would be even if they did tell us who contracted out the survey; you would have to figure out how that got that info. Though knowing the company in question would make it easier to figure out 'how'?
-Fox
Answers:
I used to work in a doctors office, so i have an inside view of what drug companies do. they offer dr's dinners, weekend trips, etc for BASIC info on pt's to conduct drug surveys. You guys might want to try asking your dr or the staff there the policy on wether or not they participate in these things.
a.
Answers:
I used to work in a doctors office, so i have an inside view of what drug companies do. they offer dr's dinners, weekend trips, etc for BASIC info on pt's to conduct drug surveys. You guys might want to try asking your dr or the staff there the policy on wether or not they participate in these things.
a.
Did you work there before or after HIPAA Reform?
I highly doubt any doctor in this day in age is sharing any patient information without your consent.
Answers:
I work in a doctor's office. I am married to a doctor. I worked in the Operating Room for 35 years. I am well educated regarding HIPPA regulations and patient's rights. Doctor's do not and cannot not give drug companies any information, BASIC or not, about their patients. It is illegal!!!
It is legal for a drug company to work with a doctor to research a new drug or a drug which is already on the market. In order to do this, the doctor and the staff are educated and under constant supervision by a representitive of this company. The doctor's credentials, experience and background are checked before he is elligable to participate in any study. The entire study is performed under STRICT FEDERAL guidelines. AND..... any patient involved in the study is aksed to do so only after being thoroughly explained to about the study. The patient needs to sign legal release forms.
Actress, you must have worked in a doctor's office prior to the reforms that have been initiated by the federal government regarding the dinners and trips that doctors can no longer take and drug companies are forbidden to provide.
Dh and I just spent $2,100.00 of our own money to attend a surgical workshop. My husband attended every lecture in order to keep himself up on the latest findings in Urology. Why do you suppose he did that? I'll tell you! He wants to give his patients the best care possible. We were brought ought to dinner once, however the drug rep is a personal friend of ours and insisted on taking us out as we were in his city. When he's in town WE pay for dinner.
I am glad to see that the NPF came forward to dispell any rumors regarding it's involvement in this mysterious survey. IMHO, the NPF has the most honorable and professional reputation of all the psoriasis sites I have visited or that I belong to.
Sorry this was a bit long winded but there was a common misconception that sorely needed correction. I would like anyone who still feels that docs are living the high life off of drug companies, etc.; to live one day in my dh's life. He is in the operating room all day today. And everytime he takes that knife in his hand his heart is in his throat and he prays. Consider his awesome responsibility. I do. I respect and love him. And I've obviously been insulted and upset by the statements made here.
Annie
Answers:
I used to work in a doctors office, so i have an inside view of what drug companies do. they offer dr's dinners, weekend trips, etc for BASIC info on pt's to conduct drug surveys. You guys might want to try asking your dr or the staff there the policy on wether or not they participate in these things.
a.
I was involved in an entertainment business oh lets say about 10 years ago. We would sell a service for a group. Anyways at least twice per year a drug rep, not sure of the company, would hire our facility to educate doctors on our drugs.
These events were well over $1,000.00 each and were paid for by the drug company. In addition, food was also brought in for the event. Sometime during the entertainment they would take a break and the drug rep would start talk chemistry with these doctors. This would be for a group of about 10 docs.
Answers:
Hey Annie, maybe your DH isn't looking for the right deals that are being offerred, i'm not sure how common stuff like this is but they certainly used our services more than once.
My dh and the thousand of other reputable doctors are not looking for deals but are looking to practice medicine. When the insurance companies deny treatments, drugs and equipment; it is people like my dh who spend unreimbursed hours on the phone every day fighting for their patients. I sort of wish my dh was a derm who specialized in psoriasis. I could just see him now arguing for treatments like he argues for treatment for his prostate cancer patients, his patients with chronic incontinence. What I am trying to say here is that the insinuation that most docs participate in this supposed illegal behavior is no different than saying every cop is on the take, or every politician is corrupt, every teen uses drugs or every priest is a molestor. Of course every group has their bad apples. The truth is most docs don't have time to partake in the bull. What little time left they have after finishing their long days goes to making it up to their families.
Please reflect on what the majority of docs do for us. They save our lives. There is a team of docs doing that right now for someone I know who is dying. She is young, my age. Not a patient, someone close to my loved ones.
Respect and tolerance, some wonderful ideals to live by.
With Love,
Annie
Answers:
Annie, very well said!!! I agree with you 150%. We have a good friend who is a neurologist. I would not take his job for all the money in the world. In fact, I don't know how he can do it day in and day out.
Sorry to hear about your friend. My prayers are with you...
Nancy
Answers:
Thanks Nancy, I needed that more than you know!!!!!!
XOXOX
Annie
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