Data Sharing Review

[Michael Simpson]

On 7/18/08, Wendy M. Grossman <wendyg@pelicancrossing.net> wrote:
> PeteM wrote:
> >
> > Personally I am much more afraid of the government's abuse of my medica=
l
> records than I am about any third party's. Partly because the government =
has
> far greater power over my life than anyone else, and partly because they
> have form in misusing personal data. And if the government wants access t=
o
> my records, they won't need to worry about whether they are encrypted,
> because they'll have the key. That's why I don't think encryption is real=
ly
> an issue in this debate at all.
> >
> >
>
> Nonetheless, it makes *no* sense to make it trivially easy for any passin=
g
> curious person to take a look. *Of course* encryption is an issue -
> especially in the sense of ensuring that the data hasn't been tampered wi=
th
> or altered. It's bad enough to have errors in medical records now; with
> electronic records that are likely to be viewed as canonical it will be t=
hat
> much worse.
>
> Perhaps the medical people here could say whether it's right to be concer=
ned
> that staff may get used to believing whatever's in the centralized record
> rather than checking for themselves?
>
> wg
>
>
2 case scenarios for you. one made up, one is real.

1) wandered into the dept for a night shift through resus, as was my
routine. It was looking a bit bloody. Turns out the there had been a
messy failed resus of a 7yr old. As is always the case staff were
looking a bit frazzled and weepy. Asked the junior who the older woman
lying in the bed in the corner with the lights off was. I had noticed
that she had a breathing tube in but it wasn't connected to anything
and wasn't being monitored. I was told that she had had a massive
stroke and was for TLC only.
I recognised her as a regular attender of the hospital that i had just
come from and knew her as a brittle diabetic who tended to overdo her
medication. Some dextrose later and she was sitting up telling me
about how she had been visiting her sister for the first time in ages
and had taken one of her turns.
nice lady. the fault lay *totally* at the door of the staff who hadn't
done a blood glucose estimation and we did the critical incident
analysis but thankfully the patient was ok.
Mistakes happen, and are happening more and more thanks to silly
regulation/targets. Unfortunately the system is creaking and is
reduced to providing best effort and relying upon serendipity
(In stitches by nick edwards is a good book)
i think this is the standard example given for the sharing of alerts

2) 20 yr old daughter gets involved with inappropriate man, becomes
infected with HIV. Is on treatment, viral load is undetectable. Has a
nasty accident whilst on holiday far away from her own healthboard and
ends up in a comatose state. Needs to have her medication with the
utmost importance but seriously needs to have the confidence that her
records are held securely.


You have probably heard these before, but in North Lanarkshire we
tried issuing smart cards to patients and it didn't work. We tried
issuing med-alert bracelets and it again didn't work.

I also have a lot of young professional patients who through one
reason or another have become drug addicts, have come to me, have been
stabilised (mainly using buprenorphine rather than methadone as it
preserves functionality), have detoxed and have remained drug free
ever since.

I really *really* don't want that to be following them around for the
rest of their lives because the negative connotations are huge and the
potential for ongoing harm (and potential relapse) are enormous.

why is this so difficult to understand?

> Perhaps the medical people here could say whether it's right to be concer=
ned
> that staff may get used to believing whatever's in the centralized record
> rather than checking for themselves?

YES. in the same way that i don't blindly trust what is written in the
notes in front of me. One should always take a history and conduct an
examination. That is one of the central pillars of good medicine.

>If someone doesn't want to use one of these bracelets that is their
>perogative. The medical mob shouldn't arrogantly impose things on
>everyone with the "justification" that they are gpong to patronise
>those who are "too stupid" to do what is "obvious".

I agree, the point that i am trying to make is that i would see the
main point of the epr is to protect the patient from the *medics* and
to try and reduce the unacceptable volume of medical errors made at
the same time protecting the patient's right to control what happens
to their data.

Mistakes will happen and when there is a vacuum of information the
potential for mistakes increases markedly.

>Now they talk about a 'sealed envelope' which would in effect create

>the multiple records that are in fact needed. (The BMA policy, which I

>wrote in 1995, divided your clinical data into discrete records each

>with a single access control list). However the sealed envelope is too

>late, and the LSP budgets don't provide for it, and the spec isn't

>ready yet, and in any case you can't do security as an add-on.

Up here we are not yet travelled down the epr road as yet so it is
exactly this sort of information that we require to insure that the
mistakes that are happening down south are not replicated here.

wrt the aims.co.uk letter it doesn't illustrate the problems that we
have with drug using mothers or children who are in contact with drug
users which is on a par or even worse than the perverse situations
described. Please see Hidden Harm, and Hidden Harm next steps

<http://www.scotland.gov.uk/Publications/2004/10/20120>
<http://www.scotland.gov.uk/Publications/2006/05/05144237>

from

<http://www.scotland.gov.uk/Publications/2006/05/05144237/10>

"2 more effective communication between agencies, particularly between
those dealing with adults and children, and including the sharing of
information. The First Minister has already announced that the
Executive will legislate to introduce a duty to share information for
child protection purposes. However, more needs to be done to break
down barriers and cultures about confidentiality that act as an
impediment to sharing information;

5 a more interventionist approach by social work and related services
in working with parental drug users to ensure adherence to care
plans/contracts;

6 developing a new national fostering strategy, to build on work
already going on to help support fostering even more effectively in
the future;"

scary stuff

once again let me state for the public record the following:
As a medic i am unhappy with the way that my profession has behaved
over the centuries. I am very concerned that the massive project to
have central repositories of patient data will lead to further abuse
of the public either by people doing things for "the greater good" or
by having poor implementation that leads to stupid errors.
<optimism>
In Scotland we *may* have the opportunity to implement a system that
has the benefits of an electronic record whilst still allowing
patients the ability to control access to their data.
</optimism>
I have no confidence in the uk government wrt data safety and i have
no wish to add yet more potential data breaches to the ones that have
already happened.

finally,

>And since when do you get to decide which emollients are available to
>people whose lives fail to enthuse them with the desire to die old?

I don't. I do however think that the continued decrease in real terms
of the price of alcohol has something to do with the 5 or so teenagers
that i saw lying on the pavement this morning at ~9.30 intoxicated to
the point where they can't stand.
The closest off-sales shop to my addiction team currently has an offer
of 1.5litres of vodka for =A36.50 in their window. We are in fairly
major trouble atm wrt alcohol.

wrt to your right to kill yourself Brian, go for it! Just please
ensure that your relatives *fully* understand that you are aware of
what you are doing and that you wish to drink yourself to death
because i for one am sick of fielding calls from them complaining to
me that i am "refusing" to do anything to "help" their
son/daughter/husband/father/mother who is drinking too much. The
explanation that i have talked at length to their
son/daughter/husband/father/mother and that 1) they are in their right
mind and 2) are aware of the harm they are doing to themselves and 3)
would rather carry on without further interference from myself doesn't
seem to have any impact on the distressed relative who inevitably
resorts to an official complaint.


mike