[Med-privacy] golly-gosh, gee-whiz....

Sat, 03 Apr 2004 10:02:53 -0800

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	 	 			 			 		 			 <font face="Arial,Helvetica,sans-serif" size="5"><b>Fingers
on our pulse</b></font> 		 			
<p><font face="Arial,Helvetica,sans-serif" size="3">Keeping a diary of
our own health will soon become a way of life, turning decades of
secrecy between doctors and patients on its head. Michael Cross reports</font></p>
<p> 		 			<font face="Geneva,Arial,sans-serif" size="2"><b> Michael Cross</b></font><br>
		 		<font face="Geneva,Arial,sans-serif" size="2"><b>Thursday April 1,
2004</b><br>
</font> 		 		 			<font face="Geneva,Arial,sans-serif" size="2"><b>The
Guardian</b></font></p>
<p> 		 <font face="Geneva,Arial,sans-serif" size="2">Bridget Jones can
chuck out her diary: today, the place to keep track of those v. bad
habits is online. <a href="http://www.healthspace.nhs.uk" target="_NEW">HealthSpace</a>,
a section of the NHS Direct website, allows people to create their own
secure electronic health record in which they can keep track of their
weight, doctors' appointments and other useful information. </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">HealthSpace is set to
play a big part in the electronic NHS being created under the &pound;6bn IT
modernisation programme. The NHS last week revealed that it is to become
a window on NHS electronic records. By 2010, if all goes well, we will
all be able to log securely into HealthSpace to view - and amend - our
own health records. </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">The idea is to help
patients take charge of their health. Enthusiasts say it could change
the nature of medicine. "It will become a patient-doctor partnership,"
says Oxfordshire GP Cecilia Pyper, whose practice, Bury Knowle, is a
pioneer in helping patients read their records. </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">This is a relatively
new idea. Traditionally, NHS medical records were assumed to belong to
the Secretary of State for Health, partly because they were written on
government prop erty stationery. These assumptions are now changing.
Patients have had the legal right to see their notes since 1991. Today,
says Pyper, the assumption is that electronic data belongs to the
individual concerned. </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">In a trial carried out
under the slogan "Trust me, I'm the patient", Bury Knowle has already
allowed 1,000 patients to view electronic records in computer booths at
the surgery. To view the record with a web browser, they identified
themselves with an electronic fingerprint-scanner and controlled the
screen with a light pen (chosen as more accessible than a mouse.) They
could print out the record if they wanted to. </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">Disturbingly, nearly
one quarter - 23% - of patients found something wrong with their record.
Sometimes this was a misunderstanding: the NHS abbreviation DNA for
"did not attend" caused alarm, Pyper says. "They thought we were doing
genetic experiments on them." Others disagreed with doctors' comments.
"There was a debate about what constituted heavy smoking." However,
Pyper says that some errors were serious. "One patient found that
penicillin allergy was not on the record." </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">Patients seemed to
like the idea: 68% said they would like to share re sponsibility for
their records' upkeep. Only 7% thought their records would be too
difficult to understand. </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">One patient, Ted East,
a 76-year-old retired policeman, welcomes the change. "People of my
generation remember when patients were kept in the dark, everyone seemed
to know about your health but you, the patient." The practice gave him
access to 50 years of his records. "With a bit of a crib-sheet
supplied, I was able to crack the code. From that time on, I felt much
more in charge of my health." </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">The practice also
tested putting records on the web. Patients were ambivalent: 14% were
extremely enthusiastic, 10% extremely unhappy, while most of the rest,
54%, had "some concerns", Pyper says. </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">Some caveats emerged
from the research. One was that test results   bearing bad news should
not be posted on the record for patients to find out by themselves.
"Most wanted to be told first by a professional," says Pyper. Patients
also felt that sensitive records such as on mental health, sexual health
and abortion, should not be posted on the web. </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">How to take account of
these concerns is a big issue being tackled by the NHS national
programme for IT. The first components of the national electronic record
"spine", also known as the care records service, will come into service
this summer, to allow doctors to meet targets for electronic
appointment-booking. </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">Patients will not have
access until later. However, Dr Steve Bentley, head clinician on the NHS
care record project, told the Healthcare Computing conference in
Harrogate last week that this is coming. Patients will also be able to
amend their records, to include such things as self-prescribed drugs.
This is important, as more and more pharmacologically active substances
are becoming available without prescription (and ordered illegally over
the internet). </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">Patients will be able
to opt out of the NHS care record - though Duncan McNeil, head of the
programme's technology office, revealed last week that this would not
mean their record would be deleted. "That would be silly. It's not
deleted from the system, but it's not accessible by the system." </font></p>
<p><font face="Geneva,Arial,sans-serif" size="2">At Bury Knowle, of the
14 patients who did not want to see their records, 11 changed their mind
once they had seen the system in action. "Patients are moving on all
the time," Pyper says. </font> 		 </p>
<p> </p>
<center> <font face="Geneva,Arial,sans-serif" size="1">Guardian
Unlimited &copy; Guardian Newspapers Limited 2004</font> </center>
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