Brave new world
Alex
Dr Alexander G Bennett
Pomona Qld 4568
Australia
[EMAIL PROTECTED]
On 18/03/2006, at 3:22 PM, Ken Harvey wrote:
Keeping the NHS electronic spine on track
http://bmj.bmjjournals.com/cgi/content/full/332/7542/656
Michael Cross, freelance journalist 1
1 PO Box 40073, London N6 5ZJ [EMAIL PROTECTED]
The NHS's "digital nervous system" is going through a jittery
phase. Its next test will be its acceptance by the public
This summer every household in England should receive a leaflet
explaining the NHS's plan to make their health records accessible
electronically. The new care records service will enable the
computerised booking of appointments (based on patients' choice),
electronic prescribing, the automatic transfer of complete records
between general practitioners when a patient moves, as well as
providing instant medical data when needed for emergency care.
Looking further ahead, the records service will create a new
medical evidence base, consisting of accurate data about
consistently identified individual patients, collected across
health and social care. Among the users of this resource will be
patients themselves, who will be able to view their records over
the internet. In short, the care records service will transform the
purpose of the medical record from a record of information
generated by health professionals primarily for their own
reference1 into a shared resource produced and used by all
concerned with the process of care.
Progress
Opinion polls suggest that most medical professionals support the
goal of an electronic record but have concerns about the NHS in
England's strategy for building it.2 Many concerns arise from the
national scale and mandatory nature of the national programme. This
year the programme, run by a Department of Health agency called NHS
Connecting for Health through private contractors, begins its main
deployment phase.
The government says that the care records service will be fully
installed in the NHS by 2007, with health and social care
information systems integrated by 2010. Liam Byrne, parliamentary
under secretary of state for care services, spoke last month of
"commendable progress" towards this aim.3 Achievements include the
installation of a new broadband computer network, connected to 98%
of general practices, as well as essential components of the care
records service "spine."
The care records service will create electronic health records by
combining central data about patients, including their identifying
characteristics (the personal demographics service), administrative
records, and important health alerts such as allergies, with
summaries of care episodes drawn from local institution-based
electronic patient records and, eventually, social care case files.
Figure 1
http://bmj.bmjjournals.com/content/vol332/issue7542/images/small/
crom060306.f1.gif
The system making this model possible is the care records service
spine. It shares a metaphor with, and puts into practice, Microsoft
chairman Bill Gates's vision of a "digital nervous system"
connecting disparate healthcare databases. The production version
of the spine, run by BT under a contract worth £620m ({euro}904m;
$1077m), went live in January. It is currently carrying demographic
data to support "choose and book," a system which allows patients
to choose where their general practitioner refers them for
secondary care, as well as some electronic prescriptions and whole
patient records when patients transfer between general practices—so
far, only if they use the same practice system. From August, if all
goes well, summaries of clinical records will begin to be loaded on
the spine.
Spine problems
Despite the minister's comments, progress has not been smooth. Last
December an upgrade to the software in the spine's demographics
service resulted in what Connecting for Health described as
"intermittent interruptions to the live service." This prevented
doctors having access to the choose and book service and electronic
prescribing. Connecting for Health said the software upgrade was a
one-off event, the most complex expected to be needed in the
spine's development. A statement said, "It would be naive to expect
that, in an undertaking of this scale, despite constant attention
to risk management, something will not go as planned."4
The spine's problems arose at least partly because the demographics
software turned out to be incompatible with one version of a
general practice system, which generated a huge number of spurious
messages, swamping the network. Such vulnerability to one piece of
software, out of hundreds of separate packages in use in the NHS,
illustrates why the programme attaches great importance to
standardising information technology, one of the original
overarching goals. However, this drive for standardisation is the
source of much unhappiness about the programme's current phase.
Implementing the care records service involves replacing existing
software in NHS organisations with "spine compliant" systems
supplied under centrally funded arrangements by local service
providers, each responsible for about one fifth of England. (One
contractor, Accenture, has two neighbouring areas.) Installing the
new system requires hospitals and other NHS organisations to
upgrade their information technology hardware and networks,
transfer data from existing systems, and train staff. The process
is disruptive and resource consuming. Migrating data is
particularly tricky because individual hospitals and departments
have devised individual ways of entering information that may not
map directly to available fields on the new screens.
Delays
The problem with this phase of the national programme is that in
many cases NHS staff are being asked to put this effort into
systems which, in the short term at least, represent a backward
step.5 This is because new software ordered through the programme
has been late arriving, forcing prime contractors to rely on
interim solutions to stay in business.
Responsibility for developing hospital software currently lies with
three specialist subcontractors, Cerner in the south of England,
IDX in London, and iSoft in the Midlands, the northeast, and east
of England. A fourth important supplier is the general practice
systems firm Emis, which after an initial estrangement from the
national programme has reached an agreement to act as an
alternative supplier to practices across England.
At least some of the hospital suppliers are behind schedule
developing software procured through the programme. Because of the
policy of paying only on delivery—a novelty in public sector
information technology projects—this shows up in their public
accounts. In January, iSoft warned shareholders that delays to the
programme would affect its profits. Connecting for Health said in a
statement: "There has been some system deployment rescheduling
because suppliers and their subcontractors have taken longer than
anticipated to deliver some software solutions. In the context of a
10 year programme, the impact of this is limited."6
Delays have local consequences, however. To try to keep the
programme on track, local service providers are deploying various
interim solutions. In acute trusts, these are little more than
basic patient administration systems, lacking the functions of
electronic patient records that some hospitals had already
installed in line with the 1998 Information for Health strategy.
Rather than accepting the proposed interim solution, a handful of
trusts needing to replace their existing systems urgently for
contractual or technical reasons have chosen to procure new systems
outside the programme. The latest example is Northumbria Healthcare.
In at least one case, the deployment of an unsatisfactory interim
solution may have serious consequences for public health. In
February, Connecting for Health admitted that an interim child
health system hastily developed by BT, the provider for London,
"did not provide all the necessary reports about the children's
immunisation status" and that manual procedures arranged by primary
care trusts could mean some parents had "not been correctly advised
of their children's immunisation needs"7
Although delays in delivery are an embarrassment to a programme
that had set much stock on running to timetable, they are not
necessarily bad news. They give the programme time to resolve
tricky and controversial questions surrounding the content of, and
access to, the care records service.
Protecting patients
The clinical leaders of Connecting for Health say that the public
strongly support electronic health records being shared between
professionals; patients are often upset when they discover that
sharing is not the norm. This is based on research carried out in
2002, before the national programme took shape.8 The research made
no mention of social care records, beyond revealing that only 23%
of people would be willing for their NHS records to be shared with
"social care staff."
To comply with data protection law and professional ethical
practice, patients need to give informed consent to having their
records shared. At the moment, the intention is to achieve this by
informing patients of their right to opt out of the care records
service (though not of the personal demographics service). A system
of "sealed envelopes" is also planned so that patients can control
access to specific parts of their record. These and other measures
are set out in a care records guarantee.9 A £5m public information
campaign due to begin this summer will inform patients of their
rights.
One aim of the campaign will be to minimise the number of people
opting out by reassuring patients that the care records service
will be secure. Access to the system will be available only to
staff issued with a smartcard, which will leave a clear audit trail
and alert privacy officers to unusual requests. In public speeches,
Richard Granger, Connecting for Health's chief executive, contrasts
these procedures with the common current practice of leaving case
notes unattended on reception desks and trolleys, with no record of
who has viewed them. The comparison is disingenuous, however.
Today, unscrupulous media organisations or private detectives would
have to cultivate hundreds of NHS staff to have a good chance of
getting access to any specific record. When records are available
regardless of geography, they will need to find only one insider
open to bribery or coercion. Even if the system guaranteed that the
access would be detected, the damage might already have been done.
Although patient consent is the most controversial current issue,
the use of universal, shared, electronic health records is likely
to pose several challenges to medical practice. One is the need for
better record keeping: doctors will have to enter data on the basis
that they may be used by complete strangers to make critical
decisions and viewed by the patients themselves (eventually,
through the MyHealthspace system, to be launched on a revamped
public website which will replace the current NHS Direct online).
There is no room in this world for informal codes such as the
apocryphal "normal for Norfolk."
Serious questions also remain unsettled about what information
should go on the record, especially when it comes to a patient's
social circumstances or information about third parties such as
family members. One certainty is that the lifelong electronic
health records created in partnership by doctors, other
professions, and patients themselves will look very different from
today's case notes.
Adapting to change
Four years after its conception, the NHS national programme for
information technology still has the flexibility to accommodate
changes in direction. A "refresh" of the programme's approach,
expected shortly, will be presented largely as a response to the
white paper Our Health, Our Care, Our Say,10 answering criticism
that the national programme is poorly aligned with the government's
NHS reforms. The refresh is likely to find ways of offering more
choice in systems, while retaining the programme's national
character. Richard Jeavons, the former health authority chief
executive appointed last year to oversee the programme's
implementation, says that in the new mixed health economy,
connection to the national care records service will be more
important than ever. "In the post reform world, it will be one of
the few defining features of the NHS, along with treatment free at
the point of care."
The refresh will also need to find ways to inject some excitement
into the programme. One possibility would be to create a few
exemplar sites by quickly assembling components of electronic
health records in the most promising sites. These might best be
based on "natural communities" of a trust and general practices,
rather than the local service provider boundaries, which were set
to create billion pound contract opportunities rather than to
reflect NHS data flows.
Summary points
The NHS information technology programme plans to transform medical
records into a single resource shared by everyone involved in the
process of care
The programme relies on connecting all care systems to a central
record or spine
Delays in developing hospital information systems compliant with
the spine have resulted in trusts having to adopt less functional
systems
Public confidence in the security of the system will be essential
to a useable spine
Four years into its story, it is still too early to predict whether
the NHS programme will succeed or fail. The only guide is from
history—that pioneers tend to over-estimate the speed of
technological change but under-estimate its long term impact.
This is the second of two articles examining the NHS strategy on
information technology
Contributors and sources: MC has written on healthcare informatics
issues for journals, newspapers, and books for more than 15 years.
Competing interests: MC carried out a short assignment for the
national programme for information technology in 2002 and has also
written occasional articles and accepted paid speaking engagements
for at least two contractors to the programme, BT and Microsoft.
References
1. Institute of Medicine. The computer based patient record.
Washington, DC: IoM, 1997: 55.
2. Medix. Doctors' views about the national programme for IT.
Jan 2006. www.medix-uk.com (accessed 5 Mar 2006).
3. Byrne L. Care records. House of Commons Official Report
(Hansard): 2006 Feb 27:col 420w.
4. Connecting for Health. Update on recent service issues, 16
Jan 2006. www.connectingforhealth.nhs.uk/news/update_service_issues
(accessed 7 Mar 2006).
5. Anon. Engaging clinicians in IT—one step forward, two back.
BMJ 2006;332: 127.[Free Full Text]
6. Connecting for Health. Spending and progress update 2006.
www.connectingforhealth.nhs.uk/news/news300106_spending (accessed 7
Mar 2006).
7. Connecting for Health. Response to child health interim
application media coverage. www.connectingforhealth.nhs.uk/news/
child_health_systems (accessed 8 Mar 2006).
8. NHS Information Authority. Share with care! People's views on
consent and confidentiality of patient information. London: NHSIA,
2002
9. NHS. The care record guarantee. London: Connecting for
Health, 2005. www.connectingforhealth.nhs.uk/all_images_and_docs/
crbb/crs_guarantee_2.pdf (accessed 7 Mar 2006).
10. Department of Health. Our health, our care, our say. London:
DoH, 2006.
Related Articles
GPs’ leader sets conditions for electronic care records
Michael Cross
BMJ 2006 332: 627. [Extract] [Full Text]
Engaging clinicians in IT—one step forward, two back
BMJ 2006 332: 127. [Extract] [Full Text]
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