Re: OT aus health group?

Alan S wrote:
On Thu, 21 Aug 2008 18:06:41 +1000, terryc
<newssixspam-spam@xxxxxxxxxx> wrote:

On Thu, 21 Aug 2008 14:17:30 +1000, Alan S wrote:


What is this survey? Do you have a link?

http://www.45andup.org.au
There will also be a link to http://www.saxinstitute.org.au which is
the research body behind it all.

I am not sure if it is available online. I did see something about
signing up online.

The posted printed survey has your name and address printd on the
form. Details provided by medicare.

It would have been better if your details were on a separate sheet
and the form just contained a link code. This would remove the
problem of completed forms going missing and being missused.

They need the link as they want to repeat this in five years and
select people for more detailed follow up(s).

You have to sign away all medical privacy.

It asks some very detailed medical questions, but none of them are
really useful for advancing any knowledge. 30 years ago, the
questions would have been good to ask, but now I can not see how
this terrible lot of badly asked questions is going to provide
useful data for such as possible causal links.

Despite the claims of being for research, it really seems to be
finding data to support health policy decisions (aka this type of
person will have poor health support as the return is little). If
you read both sites, it becomes clear that there is an extreme
shortage of research projects.

they promise the results will be freely and publically published, but
couldn't show me any. They sent a "published paper" but this was
really a add to attract researchers.

Sounds a lot like the Sax Institute desperately wants data so the
involved univerisites can attract funds from collabrative research
projects.

Was not impressed by the various logos attached. At least one of them
gives their tick for a few dollars. BTDT. Also been on academic
institutions and they are no different to wider community.


A few of the questions are totally useless; aka do you smoke.
This really needs more detail to be useful, i.e history of past
passive, etc.

I love the one on "do you eat fruit?" where fruit is defined as
item or juice. Now, these are two entirely different beasts in
my book; commercial fruit juice being laden with all sorts of
additives. They have a "meat" question, which includes cheese, but
not other sources of protein. Vegos are stuffed, no "I don't eat
meat" option.


Since there were lots of the usual reassuring platitudes on both web
sites, I decided to ask abut an IT audit and anonmisation &
disaggregation* of the data. Oh dear.

"No, this is not something we have undertaken. We do not feel it is
necessary given the procedures we have in place that we feel
optimally ensure security and confidentiality of our data."

Sigh, these are exactly the type of places that get done over and do
not have a clue. I currently report about 10 sites a day that have
had exactly that happen to them.

Since they distribute data to third party researchers (via cdrom), I
wanted to know how they prevented individuals being identified from
someone who obtained "unauthorised" access. That was a total whoosh.

If anyone who has been freely helping other people on the internet
returns the form and their answers (sans identificatin) are leaked,
it is a simple data mining exercise, maybe even just a google search
exercise, to find and locate that person.

Given the stalking that goes on online, you do not want to allow any
chance of

Several of the answers given provide information that would enhance
identity theft enormously and prevent you proving it wasn't you who
took out that $500K mortgage over your home.

A couple could be used by unscroupulous
individuals and groups to target certain people in certain
situations. We have enough exploitation of the poor and lonely now.

That is without considering the commercial value of the list.

Anyway, see what you think.


*disaagredation(sp?) of the data means that researcher do not get
given your individual replies as a whole. If a researcher wanted to
see if
some item was a factor in a disease, they are sent a summaryor
analysed data of the results instead of being sent all the
individual results to process themselves.

Thanks Terry, I'll have a look at it. I doubt that I'll be
participating, based on your report.

I'm already shot for identity theft; not difficult to find
my name now that it's on some of the web sites.


Didn't you get one in the mail? I put mine aside and only remembering it now
that Terry has spoken about it. My 30 yr old daughter got a different one,
it was about families. I also got a free bowel test kit :) Did you get
that?


.

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