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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