What weight do you give to anecdotes wrt vaccines?

[purslaine]

What weight do you give to anecdotes wrt vaccines?

A little?  A lot?  Does quantity of anecdotes matter?  Does the quality or source of the anecdote matter?

[BeckyBird]

Quickly, I should be working lol....

Lyme disease, Chronic Fatigue Syndrome, AIDS.....

without enough people speaking up, speaking out, complaining, etc. these problems would not have been investigated. If people are continuously reporting damage after vaccines, and the reports are only growing in number, then it should be investigated. Perhaps we are missing something. Let's find out.

Enough people complained of feeling ill after a little tick bite. Anecdotal, but look what was discovered. We need to pay attention to people.

[katelove]

I guess my answer is "some". I agree with the PP that volume matters and that when the same story comes up frequently then it warrants investigation. Lots of research is prompted by the researcher's observations during clinical practice.

On the other hand, I give very little weight to individual stories, especially secondhand ones, when it comes to actually making decisions about whether to vaccinate. For example, I know someone who died from measles encephalopathy but that did not impact my decision not to have our LO vaccinated.

[Taximom5]

I started out paying a great deal of attention to the stories of children dying from vaccine-preventable illnesses. Of course I didn't want to risk that for my child!

I did hear vague snippets of anecdotes of children--the neighbor's grandchild, my brother's wife's cousin, the nephew of someone at work, etc--who reportedly were fine until their 12-month shots, and then, boom, they were autistic. Quite a few of them seem to have been connected with seizures, but I really didn't pay much attention. There was no autism in my family, no seizures, so I didn't have a personal reason to pay attention.

I assumed that what I read, and heard in the news, was true: that the parents were desperately grasping at straws, and that either their child was autistic before the shots and the parent just didn't notice it, or the regression just happened to be kinda sorta around the time of the shots.

That all changed when my child had a seizure reaction to his vaccines.

It changed further when he was diagnosed with autism.

And I'm deeply ashamed that that's what it took for me to take these other mothers seriously.

So I guess the answer is, I give a lot more weight to anecdotes that either mirror my own experience, or that have no stench of PharmaShill (or any other money-making enterprise, unless I look up the science first, and ascertain that they are not selling snake oil).

[Bokonon]

I definitely value anecdotes, but that didn't weight wholly on my decision to delay vaccinations further for my children.  I did an obscene amount of reading on vaccines from many sources, including studies and the CDC Pink Book.  I started realizing that the anecdotes I was hearing were not out of line with the expected side effects, except that they are minimized by pro-vaccine sources, and anecdotes about the actual illnesses in the modern era are less severe than what many pro-vaccine sources report.  

For example, my mother had measles in 1946, when she was 2 years old.  Her mother noticed the spots when my mom was getting a bath, and then she cancelled the babysitter for that night.  It was an inconvenience and nothing more, like when I had chicken pox at age 7.  I know that measles CAN be serious, as can chicken pox, but for the supposed "before vaccine horrors!", it wasn't the big deal it's made out to be now.

[Rrrrrachel]

None at all. I have a lot of training in statistics and other mathematical sciences and I'm pretty indoctrinated.

[Mirzam]

Originally Posted by Rrrrrachel 

None at all. I have a lot of training in statistics and other mathematical sciences and I'm pretty indoctrinated.

That's strange statement to make as anecdotal evidence is the basis of all knowledge and to disregard it is foolish indeed. Medical doctors certainly give credence to anecdotal information from their patients. If a doctor puts a patient on a pharmaceutical that gives them a headache, the doctor is likely to believe the patient and put them on an alternative drug (anecdote). Surgeons often pioneers a new technique and discuss it with colleagues who then try out the procedure. They do this purely on anecdotal evidence. Ever heard of case studies, these are often published in peer reviewed journals. Case studies are all based on anecdotal evidence and the evidence is obviously useful or they would not bother to print them.

This isn't to say other scientific research is useless, it is a great tool for acquiring knowledge, but it is not the be all and end all. It is a big mistake to believe science is the only way to know what is and isn't . Doing that negates the human being in all this. We are all individuals and complex beyond the simple tenants of science. Unless of course you are comfortable reducing the human body to a biological machine, and choose to ignore free will, consciousness and emotions and reduce the reactions of the body to chemicals and Newtonian physics. Life goes way beyond chemicals and Newtonian laws, it is driven by an unseen force, the Chinese call it Chi, and you cannot predict what effect a treatment will have when given to an individual. Yes, science can predict what happens on average to a large group of people, but not what happens to an individual in that group. At the end of the day medicine is about treating the individual and no person is average.

[Rrrrrachel]

I guess we disagree about what constitutes an anecdote. If my child had a vaccine reaction I would not consider that an anecdote, I would consider that a risk factor, and it would absolutely inform my decision with regards to vaccines. If y babysitters cousins daughter had one, that would not.

A researcher might use an anecdote to sit an investigation, sure. However, when I'm making the decision whether to vaccinate or not for my family, I use data and research, not anecdotes.

[Rrrrrachel]

You're right, science doesn't tell us what will happen to an individual. It tells us in general what is likely to happen to oust individuals, but you cannot accurately apply those tendencies to a specific person or incidence. this is a basic tenet of probability. If I flip a coin and get heads five times in a row, I can be pretty sure that some tails are cong my way to balance that out, but the next flip is still equally likely to be heads as tails.

My daughter rides in the car rear facing because in general it is safer. I might get in an accident and she might be injured BECAUSE she was rear facing. However, since that is unlikely I play the odds and rear face her.

That's what decision making is all about. It's not saying "I'm not going to do this because this other thing might happen. Data and science tell me it is extremely unlikely, but it MIGHT, and you never know my kid could be the one.". My kid could be the one that gets exposed to measles and dies from it, too. I play the odds so that either way at least I know I did what I could.

[Mirzam]

Originally Posted by Rrrrrachel 

I guess we disagree about what constitutes an anecdote. If my child had a vaccine reaction I would not consider that an anecdote, I would consider that a risk factor, and it would absolutely inform my decision with regards to vaccines. If y babysitters cousins daughter had one, that would not.
A researcher might use an anecdote to sit an investigation, sure. However, when I'm making the decision whether to vaccinate or not for my family, I use data and research, not anecdotes.

Huh?! What kind of weasel response it that? Everything is an anecdote, you can't pick and choose what personal experience is an anecdote or not. You can of course choose to dismiss someone else's anecdote if it doesn't coincide with your experience or beliefs, but when you relay to your doctor that your child had a reaction to a vaccine, that by definition is an anecdote, doesn't matter if it is first hand or not. You are very trusting of medical science to allow them to treat your children as part of large group experiment. Personally, I am more inclined to treat my children as unique beings and not statistics.

[Rrrrrachel]

I don't think everything that happens to everyone ever is an anecdote, no. Name calling aside, that's my understanding of the word. My inner chi tells me that is right, so who are you to argue with it, let alone deride me for it?

I also treat my child as an individual. Believe it or not, I love my child just as much as you do yours, and I believe I am making the decision that is best and safest for them. I believe the soundest basis for that decision is looking at what is likely to happen, not what might happen. That means, especially with vaccines, leaving anecdotes out of it as much as possible.

[rachelsmama]

Originally Posted by Rrrrrachel 

None at all. I have a lot of training in statistics and other mathematical sciences and I'm pretty indoctrinated.

 Pssst, did you vote in the poll at the top of the thread yet?  My training in statistics leads me to suspect that you forgot to. 

[Rrrrrachel]

I'm on tapatalk so I haven't had a chance to, yet, but I will when I get back to my computer! Thanks for the reminder.

[erigeron]

I'm with Rrrrachel on this one, for the same reasons. 

[Super~Single~Mama]

Originally Posted by erigeron 

I'm with Rrrrachel on this one, for the same reasons. 

Me too. If I actually witnessed something, I would be likely to consider it. But I would never consider anecdotes on an anonymous online forum when making concrete decisions for my child, or other second, third, fourth hand sources of information.

[erigeron]

It's a natural human tendency to be swayed by anecdotes/things that happen to people we know, because they seem more immediate and vivid than statistics do (particularly for people who don't have statistics training--it's very easy to mislead people with statistics, and a lot of people fall for it). The place I find this the most frustrating personally is when people who are mostly anti-vax know somebody who had a bad experience with a VPD and it's all "Well, [somebody I know] got [x disease] and had [some horrible outcome], so I'll get the [x disease] vaccine but not the other ones". If you're going to rely on that sort of anecdotal evidence for a vaccine, you should look at the anecdotes for all the vaccines. Otherwise you're being logically inconsistent.

Anecdotes are vivid and easy to latch onto, but it's not just what could happen that you want to focus on--it's how likely it is. Nobody spreads stories about "We did such and such and nothing went wrong" because that's boring, but nevertheless that is the story for many people.

Note that I'm not talking about making a decision based on something that happened to your child or to a close blood relative. As someone pointed out upthread, that's not an anecdote, that's a risk factor.

[purslaine]

I did not consider anecdotes when I made my vaccines decisions many moons ago.  Indeed, the internet barely existed when my oldest was born.  The decision was made on what stats I could find, and really the lack of stats played as big a role as anything else:  my concerns and questions were not adequately answered, and I was not willing to vaccinate a child when I felt unsure and no one could respond adequately.  I have since read and discussed vaccines a fair bit, and have confirmed for myself that I made the right decision so many years ago.

I do not advocate parents vax or not vax on anecdotes - I advocate that parents do real research (CDC pink book is a good place to start) on diseases, their prevalence and severity; and vaccines - their effectiveness and side effects.  Where they stand on herd immunity.

I don't hate anecdotes, though.  I think, particularly in volume, they can point to issues that might require further exploration.

 I would speculate that anecdotes become more powerful when real data is lacking.  If you suspect the flu vaccines makes more people than one expect feel sick, but go looking for data only to find none or poorly executed studies, you might give the anecdote more weight as it is the only info (albeit imperfect) that you have.

Oh, and because I am a tone troll , the appropriate response to someones anecdote is nothing at all or "thank you for sharing" or "I hope your daughter is OK."  Not - "anecdote is not data."  It is a bit of a slap in the face for the person sharing.  I will have to remember that the next time someone has an anecdote about their neighbours neighbour who had the mumps….

anecdote,

n in medicine, an interesting fact or story, typically unpublished, about a treatment or healing modality.

 

http://medical-dictionary.thefreedictionary.com/anecdote

 

Edited by purslaine - 5/16/12 at 1:44pm

[purslaine]

Originally Posted by erigeron 

The place I find this the most frustrating personally is when people who are mostly anti-vax know somebody who had a bad experience with a VPD and it's all "Well, [somebody I know] got [x disease] and had [some horrible outcome], so I'll get the [x disease] vaccine but not the other ones". If you're going to rely on that sort of anecdotal evidence for a vaccine, you should look at the anecdotes for all the vaccines. Otherwise you're being logically inconsistent.

I find it equally frustrating when someone does vax, against measles, for example - because so-and so had it and it was awful, or better yet, due to a story about how awful the measles was for great Aunt Cecilia 80 years ago!  I find it frustrating because we know how very few measles cases there are.  It works both ways 

[Rrrrrachel]

I have ever and will ever responded to someone's personal anecdote about them or their child being harmed bya vaccine with something other than "I'm sorry that must've been awful for you," but at some point if you're going to bring your personal anecdote up over and over and expect people to make decisions or be swayed by it, someone will probably point out that it's not a sound basis for decision making. If we have to cease all conversation and resort to pity every time someone brings up something bad that happened to them or a friend it's going to get awful quiet around here.

[Mirzam]

Anecdotal evidence when it is overwhelming is something that should be taken notice of. For example, half a million people died as a result of taking Vioxx, every single one of their stories is an anecdote which pointed to Vioxx not being good. Personally, I believe every parent who feels their child was harmed by a vaccine, and am not about to brush them off and negate their belief. However, that had no bearing on my decision not to vaccinate my children, that decision was based on a number of very diverse reasons. Of course I can anecdotally tell you that it was one of the best decisions DH and I have made as parents.