[Med-privacy] EMRs
Peter Marshall
pwm@comcast.net
Fri, 4 Feb 2005 13:42:24 -0800
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BMJ=A0=A02005;330:315=A0(5=A0February), doi:10.1136/bmj.330.7486.315
How do we set the records straight?
In the United Kingdom there are plans to make elements of patients'=20
electronic health records available to any practitioner with "a=20
legitimate care relationship" anywhere in the country. There is=20
justifiable unease about confidentiality and consent in this new=20
environment. Will patients understand what is happening to information=20=
about them, and will that information be secure?
Another cause for concern, which is perhaps even more fundamental, has=20=
to do with how a medical record's context contributes to its meaning.
Half of general practices in the United Kingdom are now minimising=20
their use of paper, with routine record keeping being done on computer=20=
rather than on the traditional record card. While appreciating the=20
greater accessibility of information in a computerised record, many GPs=20=
still miss the feeling that, just by holding a records envelope in=20
their hand, all sorts of knowledge will seep into their brains.=20
Thickness, weight, state of repair, handwriting, and wee diagrams all=20
contribute. Why can't electronic records carry more of this context?
What GPs think of as useful context is probably just what patients will=20=
wish to be restricted
Some things have not, so far, been changed by computerised records. In=20=
most practices and computerised units in hospitals the record is held=20
on site, and the computer server mimics a filing cabinet. A patient's=20
continuation notes have a limited readership, and those who do read the=20=
record are part of a team and know each other. When communication is=20
with a different social group a specific message is created: a referral=20=
letter from primary to secondary care or a discharge summary or clinic=20=
letter in the other direction.
What is proposed in the NHS care records service is that items that=20
are recorded as continuation notes will be extracted and made available=20=
across the NHS. Thus another aspect of context=97the purpose of the=20
record item=97is lost. Berg and Goorman ( International Journal of=20
Medical Informatics 1999;56: 51-60[CrossRef][ISI][Medline]) described=20=
the difficulties of reconstructing the meaning of a message sent from a=20=
distance, unless all sorts of context came with it. For instance, a=20
summary code of "depression" may be recorded for an episode of severe=20
depression as defined by formal diagnostic criteria; alternatively the=20=
same code may be used for a consultation with someone who is not coping=20=
with stress and is showing some features of mild depression. This=20
distinction is important: practitioners local to the author will be=20
able to infer the difference: a remote practitioner, who only has=20
access to the coded summary, will not.
I recently had a consultation with someone who had a problem with=20
alcohol intake in the 1980s and early 1990s. He has had an application=20=
for permanent health insurance turned down (on the basis of what was in=20=
the computerised summary of his records) and was somewhat miffed. We=20
talked about the relations between the computer record, the written=20
record, and his current view of his previous condition.
This brings a dilemma. On one hand is the case for including as much=20=
context as possible in what goes into the care records service. This is=20=
in the hope that the meaning of record entries may survive the distance=20=
travelled. For meaning to be preserved in this way the record has to=20
carry surrogates for the cues that we traditionally pick up by handling=20=
a handwritten record and from personal knowledge of the author. On the=20=
other hand, what GPs think of as useful context is probably just what=20
the patient (or third parties) are likely to wish to be restricted in=20
distribution. Given the opportunity of granting consent, this is what=20
they may refuse.
As a jobbing practitioner I am not sure how to handle this. It takes=20=
shared decision making to new heights if the decision is about what is=20=
included in the record. Is it sensible to expect clinical systems to=20
make explicit to the parties in the consultation just what is going to=20=
remain local and what is going to the records service? What is the=20
legal status of information that we choose to keep local? Can we manage=20=
consultations in the future without this distinction being explicit?
The government is in the process of spending billions of pounds on the=20=
national programme for IT in the NHS. It was explicit in the Department=20=
of Health's 1998 Information for Health that one purpose of electronic=20=
health records was to provide service managers with accurate data about=20=
activity in the health service. At this late stage we still do not know=20=
how much of the local medical record is going to be exported to the=20
records service. We do not know what control patients will have over=20
what information about them is held there. We do not know if the amount=20=
of context required for a remote record to be meaningful exceeds or is=20=
less than patients will consent to. We do not know how the passage of=20
time will affect patients' and doctors' interpretations of events. In=20
short, it is not clear how a centralised record system will sit with=20
the dispersed relationships that constitute primary care or whether the=20=
government will get any useful return on its investment.
Paul Robinson, general practitioner
Snainton, North Yorkshire Paul01@btconnect.com
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<=
fontfamily><param>Helvetica</param><bigger>BMJ=A0=A02005;330:315=A0(5=A0Fe=
bruary),
doi:10.1136/bmj.330.7486.315
</bigger></fontfamily><fontfamily><param>Skia</param><bigger><bigger>=20
=
</bigger></bigger></fontfamily><fontfamily><param>Helvetica</param><bigger=
><bigger><bigger><bigger>
<bold><bigger><bigger><x-tad-bigger>How do we set the records straight?
=
</x-tad-bigger></bigger></bigger></bold></bigger></bigger></bigger><bold><=
bigger>I</bigger></bold></bigger></fontfamily><fontfamily><param>Skia</par=
am><bigger><bigger>n
the United Kingdom there are plans to make elements of
patients'</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>electronic
health records available to any practitioner
with</bigger></bigger><x-tad-bigger> </x-tad-bigger><bigger><bigger>"a
legitimate care relationship" anywhere in the country.
There</bigger></bigger><x-tad-bigger> </x-tad-bigger><bigger><bigger>is
justifiable unease about confidentiality and consent in
this</bigger></bigger><x-tad-bigger> </x-tad-bigger><bigger><bigger>new
environment. Will patients understand what is
happening</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>to
information about them, and will that information be
secure?</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> Another cause for concern, which is
perhaps even more fundamental,</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>has to do with how a medical record's
context contributes to</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>its
meaning.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> Half of general practices in the
United Kingdom are now minimising</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>their use of paper, with routine record
keeping being done on</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>computer rather than on the traditional
record card. While appreciating</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>the greater accessibility of
information in a computerised record,</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>many GPs still miss the feeling that,
just by holding a records</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>envelope in their hand, all sorts of
knowledge will seep into</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>their brains. Thickness, weight, state
of repair, handwriting,</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>and wee diagrams all contribute. Why
can't electronic records</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>carry more of this
context?</bigger></bigger><x-tad-bigger>=20
=
</x-tad-bigger></fontfamily><bold><fontfamily><param>Helvetica</param><big=
ger>What
GPs think of as useful context is probably just what
patients</bigger><x-tad-smaller> =
</x-tad-smaller></fontfamily></bold><bold><fontfamily><param>Helvetica</pa=
ram><bigger>will
wish to be restricted
=
</bigger></fontfamily></bold><fontfamily><param>Skia</param><bigger><bigge=
r>
Some things have not, so far, been changed by computerised
records.</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>In
most practices and computerised units in hospitals the
record</bigger></bigger><x-tad-bigger> </x-tad-bigger><bigger><bigger>is
held on site, and the computer server mimics a filing
cabinet.</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>A
patient's continuation notes have a limited readership,
and</bigger></bigger><x-tad-bigger> </x-tad-bigger><bigger><bigger>those
who do read the record are part of a team and know
each</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>other.
When communication is with a different social group
a</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>specific
message is created: a referral letter from
primary</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>to
secondary care or a discharge summary or clinic letter
in</bigger></bigger><x-tad-bigger> </x-tad-bigger><bigger><bigger>the
other direction.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> What is proposed in the NHS care
records service is that items</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>that are recorded as continuation notes
will be extracted and</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>made available across the NHS. Thus
another aspect of context=97the</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>purpose of the record item=97is lost.
Berg and Goorman (
=
</bigger></bigger></fontfamily><italic><fontfamily><param>Helvetica</param=
><bigger><bigger>International</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>Journal of Medical
=
Informatics</bigger></bigger></fontfamily></italic><fontfamily><param>Skia=
</param><bigger><bigger>=20
1999;56:
=
51-60<color><param>0000,0000,EEEE</param>[CrossRef][ISI][Medline]</color>)=
described the</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>difficulties of reconstructing the
meaning of a message sent</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>from a distance, unless all sorts of
context came with it. For</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>instance, a summary code of
"depression" may be recorded for</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>an episode of severe depression as
defined by formal diagnostic</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>criteria; alternatively the same code
may be used for a consultation</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>with someone who is not coping with
stress and is showing some</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>features of mild depression. This
distinction is important:</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>practitioners local to the author will
be able to infer the</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>difference: a remote practitioner, who
only has access to the</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>coded summary, will
not.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> I recently had a consultation with
someone who had a problem</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>with alcohol intake in the 1980s and
early 1990s. He has had</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>an application for permanent health
insurance turned down (on</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>the basis of what was in the
computerised summary of his records)</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>and was somewhat miffed. We talked
about the relations between</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>the computer record, the written
record, and his current view</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>of his previous
condition.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> This brings a dilemma. On one hand is
the case for including</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>as much context as possible in what
goes into the care records</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>service. This is in the hope that the
meaning of record entries</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>may survive the distance travelled. For
meaning to be preserved</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>in this way the record has to carry
surrogates for the cues</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>that we traditionally pick up by
handling a handwritten record</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>and from personal knowledge of the
author. On the other hand,</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>what GPs think of as useful context is
probably just what the</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>patient (or third parties) are likely
to wish to be restricted</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>in distribution. Given the opportunity
of granting consent,</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>this is what they may
refuse.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> As a jobbing practitioner I am not
sure how to handle this.</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>It takes shared decision making to new
heights if the decision</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>is about what is included in the
record. Is it sensible to expect</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>clinical systems to make explicit to
the parties in the consultation</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>just what is going to remain local and
what is going to the</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>records service? What is the legal
status of information that</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>we choose to keep local? Can we manage
consultations in the</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>future without this distinction being
explicit?</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> The government is in the process of
spending billions of pounds</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>on the national programme for IT in the
NHS. It was explicit</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>in the Department of Health's 1998
=
</bigger></bigger></fontfamily><italic><fontfamily><param>Helvetica</param=
><bigger><bigger>Information
for
=
Health</bigger></bigger></fontfamily></italic><fontfamily><param>Skia</par=
am><bigger><bigger> that</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>one purpose of electronic health
records was to provide service</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>managers with accurate data about
activity in the health service.</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>At this late stage we still do not know
how much of the local</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>medical record is going to be exported
to the records service.</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>We do not know what control patients
will have over what information</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>about them is held there. We do not
know if the amount of context</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>required for a remote record to be
meaningful exceeds or is</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>less than patients will consent to. We
do not know how the passage</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>of time will affect patients' and
doctors' interpretations of</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>events. In short, it is not clear how a
centralised record system</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>will sit with the dispersed
relationships that constitute primary</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>care or whether the government will get
any useful return on</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>its
investment.</bigger></bigger><x-tad-bigger>=20
=
</x-tad-bigger></fontfamily><bold><fontfamily><param>Helvetica</param><big=
ger><bigger>Paul
=
Robinson</bigger></bigger></fontfamily></bold><fontfamily><param>Skia</par=
am><bigger><bigger>,
=
</bigger></bigger></fontfamily><italic><fontfamily><param>Helvetica</param=
><bigger><bigger>general
=
practitioner</bigger></bigger></fontfamily></italic><fontfamily><param>Ski=
a</param><bigger><bigger>=20
=
</bigger></bigger></fontfamily><italic><fontfamily><param>Helvetica</param=
><bigger>Snainton,
North
=
Yorkshire</bigger></fontfamily></italic><fontfamily><param>Skia</param><bi=
gger> <color><param>0000,0000,EEEE</param>Paul01@btconnect.com</color>=20=
<bigger>=20
</bigger></bigger></fontfamily>=
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