Value of anecdotal evidence

[Guest guest]

> However I agree with Kathy that anecdotes really don't tells us

> anything.

>

>

> Alan Meyer

> ameyer2@...

Dear Alan,

I respectfully disagree... " anything " is a bit too broad a brush, in

my opinion. While one must always consider the source, nothing beats

first hand accounts of the actual users of a product, when those

accounts are presented by an disinterested third party; i.e. those

with nothing to gain.

I read the first hand accounts of all 300 plus contributers to YANA.

These accounts were not " cherry picked " in any way. Nobody there has

anything to " sell " . As I read them, I learned far more than I

learned reading clinical studies or talking with urologists,

surgeons or oncologists on the actual experiences of being

diagnosed, the decision process, the rational behind the choices

made, the treatment processes and the side effects. To follow an

individuals experience, over the course of many years, is very

enlightening. YANA is about as close as we can get to a " Consumer

Reports " for prostate cancer treatments.

The first hand accounts on the ProtonBob site are virtually all

enthusiastic about proton treatment, and I'd have to accuse Mr.

Marckini of subterfuge if he rejects any member stories that reveal

a negative experience. I'm not going to do that without some

evidence!

Also, the accounts presented in this forum are all anecdotal, too,

yet are of great value to me.

Even in clinical studies, (and I've looked at thousands over the

years regarding all sorts of issues) there is often bias, depending

on who sponsored the study. The ways that a conclusion can be

manufactured by manipulation of the data are legion. It is a fact

that drug company sponsored studies tend to conclude favorably for

their particular product than the product fares when tested by

agents unfunded by those companies.

It takes vigilance to extract the truth from the hype, and all must

exercise due diligence. My first step is " What are they trying to

sell me? " . Go to a clinic website, or look at some hospitals

brocheres, and you get marketing. Of course the patient testimonials

are all positive! Find out what procedure they are using, go to

PubMed and search for that procedure/condition and look at the data.

Preferably not data from their own " in house " studies.

My best,

Dan

[Guest guest]

Dan's post on " anecdotal " evidence is one of the most thoughtful on

this subject that I have seen on this list. I wholeheartedly agree

with everything that he said, including regarding posts on this

forum. Recognizing that all of our various inputs are anecdotal, does

that make them that much less valuable? As always, one must determine

what is useful to him, and also if a response may be useful to

another.

What is most disturbing to me are the posts that occur with far too

great a frequency on this forum, describing some that had a treatment

modality that has resulted in a reduction of quality of life, post

treatment. When you recognize that those posting here must represent

a very small percentage of those with a similar experience, it must

give you pause. These posts are also anecdotal; does that mean that

you should not feel their pain, and not offer them what sympathy and

advice that you can?

The fact that there is such confusion and conflicting information

among doctors and patients alike regarding treatments for prostate

cancer demonstrates the current state of prostate cancer treatment.

I hope and pray that there will be a " leap " forward in medical

knowledge that improves this, and that in my opinion, (dare I say

this?) proton therapy is a step in that direction.

Fuller

>

>

> > However I agree with Kathy that anecdotes really don't tells us

> > anything.

> >

> >

> > Alan Meyer

> > ameyer2@

>

>

> Dear Alan,

>

> I respectfully disagree... " anything " is a bit too broad a brush, in

> my opinion. While one must always consider the source, nothing

beats

> first hand accounts of the actual users of a product, when those

> accounts are presented by an disinterested third party; i.e. those

> with nothing to gain.

>

> I read the first hand accounts of all 300 plus contributers to

YANA.

> These accounts were not " cherry picked " in any way. Nobody there

has

> anything to " sell " . As I read them, I learned far more than I

> learned reading clinical studies or talking with urologists,

> surgeons or oncologists on the actual experiences of being

> diagnosed, the decision process, the rational behind the choices

> made, the treatment processes and the side effects. To follow an

> individuals experience, over the course of many years, is very

> enlightening. YANA is about as close as we can get to a " Consumer

> Reports " for prostate cancer treatments.

>

> The first hand accounts on the ProtonBob site are virtually all

> enthusiastic about proton treatment, and I'd have to accuse Mr.

> Marckini of subterfuge if he rejects any member stories that reveal

> a negative experience. I'm not going to do that without some

> evidence!

>

> Also, the accounts presented in this forum are all anecdotal, too,

> yet are of great value to me.

>

> Even in clinical studies, (and I've looked at thousands over the

> years regarding all sorts of issues) there is often bias, depending

> on who sponsored the study. The ways that a conclusion can be

> manufactured by manipulation of the data are legion. It is a fact

> that drug company sponsored studies tend to conclude favorably for

> their particular product than the product fares when tested by

> agents unfunded by those companies.

>

> It takes vigilance to extract the truth from the hype, and all must

> exercise due diligence. My first step is " What are they trying to

> sell me? " . Go to a clinic website, or look at some hospitals

> brocheres, and you get marketing. Of course the patient

testimonials

> are all positive! Find out what procedure they are using, go to

> PubMed and search for that procedure/condition and look at the

data.

> Preferably not data from their own " in house " studies.

>

> My best,

> Dan

>

[Guest guest]

> If you look at anecdotes, don't just look at one, look at a number.

Good advice!

The size of the sample adds credence to any " study " , whether it's a

clinical study, a meta-analysis, or anecdotal accounts. The more the

better.

Even something as simple as a " second opinion " doubles the sample size!

My best,

Dan