The NHS has changed the consent model for accessing a database containing
personal information, allowing patients more control over which details can be
read by medical practitioners.
Patients will now be asked for permission before their
Summary
Care Records (SCRs) are viewed by NHS staff, and information deemed
particularly sensitive will be granted another layer of protection.
Previously, patients had to contact their GP to opt out of the database if
they did not want their records included. If they did not opt out, their
information would go automatically onto the database.
The revision of policy follows a report by University College Hospital (UCL)
published in May this year, which raised concerns about the complexity,
usability and ethical integrity of the system.
The NHS has addressed concerns raised by medical practitioners in an attempt
to find a better solution for patients, according to Gillian Braunold, clinical
director of the SCR and
HealthSpace
programmes.
"The UCL report that we commissioned confirmed our view that it was important
to change the consent model to simplify it and make it work better for patients
and clinicians," she said.
"We have listened to doctors and nurses who have raised concerns about the
complexity of the earlier model. We created mousemats with instructions, and the
very fact that we had to leave a reminder on people's desks about how the system
worked suggested there was a problem.
"We are certain that we now have a model which will work across a full range
of care situations."
Patients will now be able to choose whether to deny permission for records to
join the database, whether they want to be asked this question each time they
have a medical encounter, or whether they want to allow full permission for all
details to be uploaded.
Patient choices are then audited and, in the event of a privacy setting being
overruled, the privacy officer will be alerted and the situation will need to be
justified.
This may happen in situations where the patient is unconscious, for example,
or if it is necessary in the interests of public safety.
A new tool will offer peace of mind to doctors who may have been concerned
about inadvertently sending certain kinds of information to the database, along
with more routine issues.
This will allow sensitive information on pre-defined issues, such as abortion
and sexually transmitted disease, to be shared only with explicit consent.
And if a patient also wants to prevent the sharing of information on an
unlisted issue, they can decline permission when they are still with the doctor
at the point of care.
"The UCL discussion described clearly that it is better to address consent at
the point of care, especially when dealing with difficult-to-reach groups and
people with limited cognitive ability," said Braunold.
Trials at early-adopter sites are now coming to an end, and the system is
expected to go live across the UK in the 2009/10 financial year.
There will be no pilots of the amended features, which will affect the
viewing element of the system and not individual suppliers' products.
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