David More wrote:
Hi Richard,
This is very serious stuff
"So if a patient has control over what goes into the file does that mean
they don't have the illness. Can patients choose not to have
Huntington's or schizophrenia or a history of sexual abuse? I find it
hard to understand these things in this age of Newspeak."
Many people need many identities to avoid abuse and persecution.
There is no plan I know about of ID management to handle this issue.
EHR's will not happen I reckon till it is worked out.
Curious to know what others think
David,
It seems to me we have the choices between 'really hard to opt out'
systems in which the patient's health may benefit but their personal
privacy will be at serious risk, or 'patient-controlled' systems where
the choice starts at deciding whether you opt in or not, and goes on to
what is included in the record, which may reduce the clinical value of
the record, but leave the patient feeling secure from misuse or
disadvantage.
I thought the New York City decision, which I posted on this list in
January but received little response to, making diabetes a notifiable
disease represented a landmark in this debate.
Here we have for the first time, to my knowledge, in a 'free' society a
non-communicable disease becoming notifiable on the basis of the public
purse's good, not the health status of other citizens. I would have
thought the 'really hard to opt out' supporters would have seized on
this as an example of how dire times demand dire measures.
In some ways I feel that our understanding of how shared electronic
records will work and what benefits/problems will flow is at about the
same stage as the first map in the 16th century vaguely showing the New
World as a separate continent, not a part of the Eurasian land mass.
Give our government's track record on data-matching what chance on a
unique patient identifier? they can't have it both ways and use
data-matching re tax, social security, etc. and still expect our
co-operation with these sorts of schemes. Which was essentially what was
happening when the minister was complaining about the low uptake of
smart cards in Tasmania, among other things, back in December.
Greg
--
Greg Twyford
Information Management & Technology Program Officer
Canterbury Division of General Practice
E-mail: [EMAIL PROTECTED]
Ph.: 02 9787 9033
Fax: 02 9787 9200
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