CDC National Immunization Survey (I was "randomly" selected) - Mothering Forums

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#1 of 71 Old 10-04-2010, 10:53 PM - Thread Starter
 
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I'm a little nervous. Has anyone else ever gone through this survey with no repercussions later?

They sent a letter stating that I was randomly chosen for the CDC's National Immunization Survey. I wasn't sure what to do at first and I just put it to the side. I wasn't too sure about the randomness either. Then they called twice to conduct the survey and DH put them off and asked if they could call back at another time. So, tonight was the night they called back and I answered. I figured I would listen to the questions and respond the best I could. It seemed pretty innocent at first. They asked what DD's first name or first initial was. I gave them her first initial "L" but the interviewer heard me incorrectly and kept using "O". I didn't bother correcting her because I didn't think it mattered. They asked if she was ever breastfed and until what age. I lied about that, she is still breastfeeding with no end in sight but I told the interviewer 18 mo. I just didn't want to be targeted in any way. When she asked about what vaccinations she received I said none. She asked for DD's Dr's name and address. I was a little hesitant to give that out but I figured that my Dr. is very non-vax friendly and that they are probably used to dealing with this so I gave it to them. Then she asked for my DD's name and I just froze. I felt very dupped at that point, like they only asked for a first name or initial in the beginning so that I would answer their questions because if they would have asked for her whole name in the beginning I wouldn't have proceeded with the interview. I asked why they needed her name and the interviewer said that they send a letter to DD's Dr. for her vaccination record. I repeated that there is no vaccination record because DD hasn't had vaccinations. The interviewer seemed very baffled and put me on hold to talk to a supervisor. When she came back she said that they still needed DD's name so that the Dr. could find the correct patient and since DD had no vaccinations he would just have to send the form back blank. I flat out told her I wasn't comfortable giving her my daughter's name and that I realize this is a hot button issue and I wouldn't want to be harrassed in anyway. The interviewer was very nice and said that since I seemed uncomfortable she would give me the CDC's website concerning the survey and what they use the info. for and she would call me back in a week to complete the interview after I had time to do research. I did look at the website and they do say that the personal information is not given out with the survey summary. But I'm not sure that makes me feel entirely better. I intend to call the Dr. tomorrow and ask if they have dealt with this before but have any of you dealt with this?

Do I have a reason to be uncomfortable? Or should I just complete the interview and not be concerned.

Married to my soul mate and totally devoted to DD (6/08) and enjoying our 2 cats and many fish. Wishing for a "green" house in the country where we can raise more children!
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#2 of 71 Old 10-05-2010, 12:54 AM
 
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Wow, reading that story made me uncomfortable for you! I don't think I would give out my child's personal information like that. Call me paranoid, but it just seems kind of creepy!

 
 
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#3 of 71 Old 10-05-2010, 01:06 AM
 
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Creeped me out too. I have not had experience with this, but I think I would answer with a big fat, "not interested" and hang up.

Medical records are private. Your dd's dr couldn't send the CDC her vax records without your consent. Right?

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#4 of 71 Old 10-05-2010, 02:16 AM
 
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How do you even know it was the CDC? Anyone can pretend to be anyone on the phone, and there's software that can mimic specific numbers to fool caller ID.

That's what I finally asked the guy who repeatedly called our house demanding that I complete the same survey as my "civic duty" (yes, he actually said that). I asked him for his full name, home address, and SSN so I could make sure he was who he said he was. He got exasperated and angry but I think I made my point (before telling him to never call us again and gently hanging up on him).

I wouldn't participate in one of those surveys no matter what. If it's truly anonymous, they don't need names, addresses, phone numbers, or any other identifying information. So maybe it isn't so anonymous after all...

Sorry that happened to you, mama. It creeped me out too. I figure since I lived in NY state at the time, we were on the no-vax state registry (!) and it flagged us with the feds... "randomly", of course.

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#5 of 71 Old 10-05-2010, 02:42 AM
 
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Facinating. We've been "selected" for that survey (or a similar one) at least twice now (might have been three times?) and we always have to tell them several times that we will not answer and they eventually stop calling.

The part about contacting your Dr. bugs me. I would think that violates HIPPA....

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#6 of 71 Old 10-05-2010, 03:53 AM
 
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It sounds pretty normal to me, like what they've been doing for a while now. Here's an example of stats that they compiled by getting responses from people like you: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5936a2.htm. In the intro they describe how they got their results:

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To estimate coverage for all age-eligible children, NIS uses a quarterly, random-digit--dialed sample of telephone numbers for the 50 states and selected urban areas and territories,* followed by a mail survey of the children's vaccination providers to collect vaccination information.
I think the reason that they contact the vaccination providers is to verify things, since a parent's memory can be faulty. They can't get your child's medical info without your consent, which is why they ask for your consent. Since they're contacting the child's doctor, they'll need the child's name so the doctor knows which patient's records to check, YK?

It's certainly your choice about whether or not to participate. And if you're afraid that the information is going to be used against you somehow, that would be worrisome. I do, however, worry that non-vaxers are going to be under-represented in these kinds of surveys because of many of their deep mistrust for the government.
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#7 of 71 Old 10-05-2010, 10:41 AM
 
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Creepy. They have no business with that private information and I would never participate. Fine if someone cooperates voluntarily, but I would never hand out mine or my children's information to anyone, let alone the CDC. Not their frigging business.
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#8 of 71 Old 10-05-2010, 10:52 AM
 
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Since we are not obligated to give out that information, as a right to privacy, I would have declined the interview, and any other calls after that.

Interesting I have never received a call like that before, but if I ever do, it will just be a waste of their time.
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#9 of 71 Old 10-05-2010, 11:17 AM
 
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That's what I finally asked the guy who repeatedly called our house demanding that I complete the same survey as my "civic duty" (yes, he actually said that). I asked him for his full name, home address, and SSN so I could make sure he was who he said he was. He got exasperated and angry but I think I made my point (before telling him to never call us again and gently hanging up on him).
Dh does this too--anytime a solicitor calls he asks for their SSN to verify their identity. Usually they are the ones that hang up! We've also starting get fewer solicitation calls since he started doing this.
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#10 of 71 Old 10-05-2010, 01:45 PM
 
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We were also randomly selected... 1 month after turning in dd's exemption

I don't participate. If the gov't really wanted that info, they could get it. I'm not going to make their job easy or give out info I think should be private. Plus, giving them reasons for not vaxing only gives them more avenues to scare people with when they introduce their next fear mongering campaign.
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#11 of 71 Old 10-05-2010, 01:51 PM
 
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We also got a call.... But, they said my son was too old (30 months) and I think their cut off was 27 months so they didn't ask me any questions. I did ask them though what they were looking at and they said they were doing a study on the quality of the pertussis vaccination. They also said they got our number randomly but they asked my husband to speak to whoever in the house made vaccination decisions... It all seemed a little odd to me especially considering we don't vax but whatever.
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#12 of 71 Old 10-05-2010, 04:58 PM
 
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Originally Posted by heathergirl67 View Post
It sounds pretty normal to me, like what they've been doing for a while now. Here's an example of stats that they compiled by getting responses from people like you: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5936a2.htm. In the intro they describe how they got their results:


I think the reason that they contact the vaccination providers is to verify things, since a parent's memory can be faulty. They can't get your child's medical info without your consent, which is why they ask for your consent. Since they're contacting the child's doctor, they'll need the child's name so the doctor knows which patient's records to check, YK?

It's certainly your choice about whether or not to participate. And if you're afraid that the information is going to be used against you somehow, that would be worrisome. I do, however, worry that non-vaxers are going to be under-represented in these kinds of surveys because of many of their deep mistrust for the government.
This. It seems pretty normal to me. I worry about non-vaxers being under represented. But, honestly, I wouldn't want to give out this sort of info over the phone either. Maybe if they had a link on their website, I'd feel more comfortable.

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#13 of 71 Old 10-05-2010, 05:11 PM
 
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Actually, after going to the CDC website, maybe it's a good thing that non-vaxers just refuse to answer. It lets the CDC think that 99% of people are vaxing.

http://www.cdc.gov/media/pressrel/2010/r100916.htm

I wouldn't want them to think it's a problem and then throw a lot of money and resources and pressure at us to get us to vax.

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#14 of 71 Old 10-05-2010, 07:24 PM - Thread Starter
 
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Thank you for all of your feedback. I've made my decision that when they call back next week not to complete the survey. I felt uncomfortable while doing it and I should have just gone with my Mama instinct and ended there.

heathergirl67, while I see your point of unvaxed children being unrepresented I tend to agree with Xerxella. I don't want the government bothering me about my decision to not vax and they sure don't need to spend extra money to pressure me about it. Apparently they already know based on the "randomness" of the survey and from everyone else on here that has been "randomly" selected. I do fill out the proper waivers when I take DD to the Dr. for well baby visits and as ammiga said if they really want this info. they can get.

Married to my soul mate and totally devoted to DD (6/08) and enjoying our 2 cats and many fish. Wishing for a "green" house in the country where we can raise more children!
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#15 of 71 Old 10-05-2010, 07:46 PM
 
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Thank you for all of your feedback. I've made my decision that when they call back next week not to complete the survey. I felt uncomfortable while doing it and I should have just gone with my Mama instinct and ended there.

heathergirl67, while I see your point of unvaxed children being unrepresented I tend to agree with Xerxella. I don't want the government bothering me about my decision to not vax and they sure don't need to spend extra money to pressure me about it. Apparently they already know based on the "randomness" of the survey and from everyone else on here that has been "randomly" selected. I do fill out the proper waivers when I take DD to the Dr. for well baby visits and as ammiga said if they really want this info. they can get.
You should only do what you're comfortable with. I'm glad you've made a decision that you can be happy about!
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#16 of 71 Old 10-06-2010, 04:39 PM
 
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I received a letter in the mail saying we'd been randomly selected But there is absolutely no reason for them to contact the doctor to check vaccination rates - the doctors already report the rates in their practice - why would they need the names of the non-vaxers?

I do deeply mistrust the government. I don't believe the surveys are 'random' and I do believe they are compiling a database of 'refusers' - all for the good of the public health, no doubt. Funny the guy on the phone mentioned pertussis. Since pertussis is considered 'epidemic' right now, there are all kinds of 'health law' loopholes that can kick-in to circumvent privacy.

Our government has illegally wire-tapped our homes, tortured citizens, etc all in the name of national security... what makes you think they wouldn't illegally get your non-compliant health info for 'the greater good'?
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#17 of 71 Old 10-06-2010, 07:45 PM
 
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Since we are not obligated to give out that information, as a right to privacy, I would have declined the interview, and any other calls after that.

Interesting I have never received a call like that before, but if I ever do, it will just be a waste of their time.
Yup. I would have just said "Thank you, but I'm not interested in participating. Have nice day."

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#18 of 71 Old 10-06-2010, 08:47 PM
 
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I do understand that the climate in the "land of the free" is much scarier than here in Canada but I find the general paranoia about this kindof survey a bit extreme.

If non- and selective vaxers are misrepresented in such studies, it actually puts them more at risk of future problems. The reason govts can get away with mandating vaxs is that they have stats that show that people are highly vaccinated and epidemics do not seem too common. If they had the real rates, it might look a lot less convincing to force kids to get vaccinated. They also look at adverse reactions per million children receiving the vaccines. If non-vaxers are not included, it makes vaccines seem safer.

So, while there is a possibility that the government will be sending the men in black to inject your children in their sleep, the more likely scenario is that there are a bunch of exasperated medical sociologists at the CDC wondering why non vaxers keep hanging up the phone.

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#19 of 71 Old 10-06-2010, 09:23 PM
 
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I think the reason that they contact the vaccination providers is to verify things, since a parent's memory can be faulty. They can't get your child's medical info without your consent, which is why they ask for your consent. Since they're contacting the child's doctor, they'll need the child's name so the doctor knows which patient's records to check, YK?
I'm wondering if they are snooping around trying to find the *doctors* who are "allowing" people to not vax. It's not you they really want to get at, it's the doctors. This cannot be good.

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#20 of 71 Old 10-06-2010, 10:53 PM
 
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I do understand that the climate in the "land of the free" is much scarier than here in Canada but I find the general paranoia about this kindof survey a bit extreme.

If non- and selective vaxers are misrepresented in such studies, it actually puts them more at risk of future problems. The reason govts can get away with mandating vaxs is that they have stats that show that people are highly vaccinated and epidemics do not seem too common. If they had the real rates, it might look a lot less convincing to force kids to get vaccinated. They also look at adverse reactions per million children receiving the vaccines. If non-vaxers are not included, it makes vaccines seem safer.

So, while there is a possibility that the government will be sending the men in black to inject your children in their sleep, the more likely scenario is that there are a bunch of exasperated medical sociologists at the CDC wondering why non vaxers keep hanging up the phone.
I'm not avoiding the survey because of the men in black... like I said earlier, the gov't has access to our vax status. Dd has an exemption on file and I'm sure that is how we got "randomly selected" in the first place.

I refuse to participate in the surveys because I don't want our reasons for not vaxing to be used in the next "get vaxed" campaign. Maybe the last slew of non-vaxers let the survey people know they were refusing dtap because it didn't stop transmission of pertussis. Now tv is flooded with "do it for your baby" ads and drs are telling moms-to-be not to let people near their babies if they are not utd, which makes no sense.

How does leaving non-vaxed kids out of a study make the vax look safer? If they never received the vax, they can't track adverse reactions due to the vax. I'm confused by this point.
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#21 of 71 Old 10-06-2010, 10:53 PM
 
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I do understand that the climate in the "land of the free" is much scarier than here in Canada but I find the general paranoia about this kindof survey a bit extreme.

If non- and selective vaxers are misrepresented in such studies, it actually puts them more at risk of future problems. The reason govts can get away with mandating vaxs is that they have stats that show that people are highly vaccinated and epidemics do not seem too common. If they had the real rates, it might look a lot less convincing to force kids to get vaccinated. They also look at adverse reactions per million children receiving the vaccines. If non-vaxers are not included, it makes vaccines seem safer.

So, while there is a possibility that the government will be sending the men in black to inject your children in their sleep, the more likely scenario is that there are a bunch of exasperated medical sociologists at the CDC wondering why non vaxers keep hanging up the phone.
I tend to agree. It seems to me like the amount of concern in this area is way out of proportion to the actual threat. Bordering on paranoia, really. But I'm sure that others think that I am being naive.
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#22 of 71 Old 10-06-2010, 10:58 PM
 
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I received a letter in the mail saying we'd been randomly selected But there is absolutely no reason for them to contact the doctor to check vaccination rates - the doctors already report the rates in their practice - why would they need the names of the non-vaxers?

I do deeply mistrust the government. I don't believe the surveys are 'random' and I do believe they are compiling a database of 'refusers' - all for the good of the public health, no doubt. Funny the guy on the phone mentioned pertussis. Since pertussis is considered 'epidemic' right now, there are all kinds of 'health law' loopholes that can kick-in to circumvent privacy.

Our government has illegally wire-tapped our homes, tortured citizens, etc all in the name of national security... what makes you think they wouldn't illegally get your non-compliant health info for 'the greater good'?
Not every medical record is reported to the CDC, so they don't know every vaccination or vaccine-refusal. That's why they do the studies. They get their percentages of people who vaccinate based on these interviews, and follow-up confirmations with HCPs, and extrapolate for the population.
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#23 of 71 Old 10-06-2010, 11:20 PM
 
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Not every medical record is reported to the CDC, so they don't know every vaccination or vaccine-refusal. That's why they do the studies. They get their percentages of people who vaccinate based on these interviews, and follow-up confirmations with HCPs, and extrapolate for the population.
Well, that's the problem isn't it? Its billed as a 'health' study, but the only concern is vaccine uptake. The letter I received specifically said they are looking for vaccine coverage, in order to provide better health coverage in certain areas. They are not doing a study to improve health outcomes, they are doing a 'study' to find resistant pockets of non-vaxers. And Heather, if my insurance company can send me reminders saying not all members of my family are up-to-date on vaccines - then I'm pretty sure the CDC can get vaccine rate coverage for most zipcodes in America without 'random', time-wasting phone surveys. Again, the letter states very clearly its about vaccine coverage, and the letter even ends with helpful info on where I can get vaccinated nearby! "Extrapolate for the population".
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#24 of 71 Old 10-07-2010, 12:04 AM
 
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Valuing your privacy is not paranoia; it just means you don't think any old stranger who calls has a right to your private medical information--no, not even if they have a shiny badge and collect a government paycheck. My family's vaccine status is none of their business.

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#25 of 71 Old 10-07-2010, 12:49 AM
 
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My conversation would have sounded more like "None of your business!" [click]

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#26 of 71 Old 10-07-2010, 12:50 AM
 
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I haven't been contacted. We also screen all our calls though. Ds has and exemption on file from years back when he was in developmental preschool.

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#27 of 71 Old 10-07-2010, 09:13 AM
 
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Valuing your privacy is not paranoia; it just means you don't think any old stranger who calls has a right to your private medical information--no, not even if they have a shiny badge and collect a government paycheck. My family's vaccine status is none of their business.
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#28 of 71 Old 10-07-2010, 09:24 AM
 
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Valuing your privacy is not paranoia; it just means you don't think any old stranger who calls has a right to your private medical information--no, not even if they have a shiny badge and collect a government paycheck. My family's vaccine status is none of their business.
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#29 of 71 Old 10-07-2010, 02:39 PM
 
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but my daughter was too old for all the questions. In one sense, I'm glad I answered the one question because they need to know the real number of healthy, non-vaxed kids!
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#30 of 71 Old 10-07-2010, 07:33 PM
 
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Valuing your privacy is not paranoia; it just means you don't think any old stranger who calls has a right to your private medical information--no, not even if they have a shiny badge and collect a government paycheck. My family's vaccine status is none of their business.
Valuing your privacy also =/= thinking that they're out to get you.
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