The Detailed Care Record
Vision and potential
19. Patient
record systems which record detailed clinical information that
can be shared or joined electronically within and between a range
of local organisations are the "holy grail" for NPfIT.
Such Detailed Care Record (DCR) systems can bring dramatic improvements
to the safety, quality and efficiency of NHS care, not only through
faster access to and sharing of patient information, but also
by supporting key clinical processes such as imaging and prescribing.
More sophisticated clinical systems can further improve care,
for example by supporting clinical decision-making and providing
automatic messages and alerts to challenge unsafe practices. (Paragraph
227)
20. Achieving the
widespread uptake of DCR systems is therefore the single most
important advance that the NHS can make towards the provision
of faster, better integrated and more patient-centred care. The
potential benefits from detailed systems are wider than those
offered by the national SCR system. Moreover, the goal of providing
DCR systems to all NHS providers in England was clearly set out
in the specification document on which NPfIT was based and tendered.
It is thus on NPfIT's success in implementing DCR systems that
the programme's effectiveness should ultimately be judged. (Paragraph
228)
21. Yet there is a
perplexing lack of clarity about exactly what NPfIT will now deliver.
It is not clear what information will be recorded and shared on
DCR systems, nor the range of organisations that will be able
to share information. Suppliers told us there will be significant
variation between the size of different areas. The Department
stated that DCR systems may be confined to areas as small as a
single hospital or as large as an entire SHA. While local control
over the new systems is a desirable goal, it is surprising that
the architects of the DCR were not able to provide a clearer vision
of what is planned. There is an explanatory vacuum surrounding
DCR systems and this must be addressed if duplication of effort
at a local level is to be avoided. We recommend that Connecting
for Health:
- Publish clear information about
its plans for DCR systems, stating in particular what area will
be covered by shared records and what degree of information sharing
will be possible; these plans should make reference to the original
specifications for the Integrated Care Records Service, making
clear how the scope of the project has changed since 2003; and
- Set out clear milestones for achieving the increasing
levels of interoperability and automation offered by DCR systems.
(Paragraph 229)
Progress
and implementation
22. Progress on delivering
the various elements of shared DCR systems has varied considerably.
Projects such as the N3 network and the deployment of Picture
Archiving and Communication Systems are on the way to successful
completion: Connecting for Health deserves some credit for these
successes. However, the continuing delays to delivering new Patient
Administration Systems (PAS) and functions such as electronic
prescribing in hospitals are a major concern. As a result of such
delays, the shared DCR remains a distant prospect. Only BT provided
an estimate, 2010, of when shared records will be available. This
timetable only applies to the London area, however, and the level
of information sharing which will be possible by this date was
unclear. (Paragraph 230)
23. There have been
many causes of the delays in delivering new systems. One of these
has been the expansion to the scope of the programme since 2002.
Changes were perhaps inevitable given the scale of NPfIT, but
it is disappointing that essentially administrative applications
such as Choose and Book were given priority ahead of clinically
useful DCR systems. It is also apparent that the original timescales
for deploying DCR systems were over-ambitious and did not take
sufficient account of the complexity of replacing existing systems.
The failure to give hospitals responsibility for implementing
their own systems, and the lack of focus on changing local working
practices to accommodate newly deployed systems, have also caused
delays. (Paragraph 231)
24. The lack of progress
on implementing new hospital PAS software, which has in turn prevented
suppliers from deploying more sophisticated clinical systems,
remains the biggest obstacle to delivering shared local records.
The implementation of new hospital systems is more than two years
behind schedule. In London and the South, where Cerner's Millennium
system is to be deployed, there is some evidence of progress,
as well as a timetable for completing implementation in London.
Yet in the remaining three clusters, which are awaiting iSoft's
Lorenzo product, delays drag on. Such delays have left many hospitals
relying on increasingly outdated systems for their day-to-day
administration. Most worryingly, the failure to deliver systems
on time has reduced the confidence of local clinicians and managers
in the programme, something which has itself contributed to delays.
(Paragraph 232)
25. We recommend that
Connecting for Health:
- Ensure that all LSPs publish
detailed timetables for delivering new PAS applications, electronic
prescribing systems and shared local record systems, indicating
what level of information sharing will be possible when DCRs are
first implemented; and
- Set a deadline for the successful deployment
of the Lorenzo system in an NHS hospital, making clear that if
the deadline is not achieved then other systems with similar capability
will be offered to local hospitals. (Paragraph 233)
The way forward
26. In
light of a range of concerns, including the delays to elements
of the DCR programme, a number of witnesses called for an independent
review of the whole of NPfIT. Whilst we understand the reasons
for this, we do not agree that a comprehensive review is the best
way forward. First, many of the questions raised by the supporters
of a review would be addressed if Connecting for Health provided
the additional information and independent evaluation which we
recommend in this report. Secondly, the programme has already
been scrutinised by the National Audit Office, the Public Accounts
Committee and ourselves. We therefore recommend that:
- The implementation of DCR systems
be addressed in the short term by increasing both the local ownership
and the professional leadership of the programme; and
- The ongoing review by Lord Darzi on the future
of the NHS include in its remit the long-term prospects for using
electronic systems to improve the quality of care, particularly
for the growing number of patients with long-term conditions.
(Paragraph 234)
27. The
Committee recognises the need to maintain a balance between central
and local input into the development of DCR systems. We acknowledge
the success of NPfIT's national leadership in ensuring economies
of scale and effective contract management. However, we disagree
that this highly centralised approach is necessary to ensure consistent
development of new systems across the NHS, provided that sufficient
attention is given to nationally agreed technical and clinical
standards. It is also clear that centrally driven implementation
of local systems has stifled local activity and caused frustration
and resentment at trust level. The successful delivery of DCR
systems depends upon the ability of Connecting for Health to harness
the benefits from local as well as national input, something which
it has not achieved so far. (Paragraph 235)
28. There are already
signs of a change of approach to increase local ownership of system
implementation. Accountability is being devolved through the NPfIT
Local Ownership Programme and control for some users is being
increased through GP Systems of Choice. These measures are welcome
but overdue. There is a need to go further and faster with reforms
of this type. We recommend that:
- Connecting for Health devolve
responsibility for performance managing implementation of all
NPfIT systems to Strategic Health Authorities (SHAs);
- SHAs devolve responsibility for operational deployment
by giving individual hospital trusts control over implementing
their own new systems. SHAs should also devolve responsibility
for implementing shared record systems across local health communities
to their constituent Primary Care Trusts (PCTs);
- SHAs, PCTs and hospital trusts be given the authority
to negotiate directly with LSPs and to hold suppliers to account,
so that local organisations are not given responsibility without
power; and
- Connecting for Health offer all local organisations
a choice of systems from a catalogue of accredited suppliers,
as far as this approach is possible within the limitations of
existing contracts. (Paragraph 236)
29. Connecting
for Health's own role should switch as soon as possible to focus
on setting and ensuring compliance with technical and clinical
standards for NHS IT systems, rather than presiding over local
implementation. Clear standards would allow systems to be accredited
nationally but would also ensure that local trusts have a choice
of system and control over implementation. (Paragraph 237)
30. Technical standards
should cover system security and reliability but should focus
in particular on ensuring full interoperability between accredited
systems. Comprehensive interoperability standards should guarantee
that data can be seamlessly exchanged between systems whilst ensuring
that users are not committed to a single supplier. In order to
develop transparent technical standards, we recommend that Connecting
for Health:
- Establish an independent technical
standards body responsible for setting the interoperability requirements
for data exchange for all systems deployed in the NHS. These standards
should be published and subjected to full external scrutiny;
- Require all system suppliers to the NHS to meet
and demonstrate conformity with these standards. Systems should
be "kite marked" or classified to give details of their
compatibility; and
- Work with industry and academia to establish
an independent technical standards testing service to evaluate
and accredit systems for use in the NHS. (Paragraph 238)
31. Safe
and effective data sharing, the fundamental aim of DCR systems,
also requires a more standardised approach to the recording of
clinical information. Such an approach is at the heart of ensuring
real interoperability between systems and is vital if data from
DCR systems is to be used as a basis either for the SCR or for
research. The NHS Data Dictionary and the SNOMED CT coding system
are important to achieving more consistent recording of patient
information. We recommend that Connecting for Health publish a
timetable for introducing SNOMED CT across the NHS. (Paragraph
239)
32. But Connecting
for Health must do much more to ensure that the recording of detailed
clinical data is standardised. Professionally developed datasets
and agreed approaches to the structure and content of detailed
records are urgently needed for each of the main clinical specialties
and for use in a range of different care settings. Developing
such standards will require close collaboration with Royal Colleges
and other professional bodies. We recommend that Connecting for
Health work with professional groups to:
- Identify the information standards
which will be required within their specialty area; and
- Develop and implement consensus-based clinical
information standards. (Paragraph 240)
33. Separate
clinical records on an individual patient can only be combined
safely if each person can be accurately identified. The introduction
of the new NHS number as the unique patient identifier and its
allocation at birth through NHS Numbers for Babies is therefore
a significant achievement. Yet the value of this work and the
future integrity of clinical information will be undermined if
organisations are unable to retrieve an individual's NHS number
when they need to use it or to allocate temporary NHS numbers
for use in emergencies. We recommend that:
- The Department of Health set
a timetable for mandating the use of the correct NHS number on
all clinical communications, and make this a performance measure
for all NHS organisations;
- Processes are introduced to allow temporary NHS
numbers to be allocated which can subsequently be reconciled with
the patient's permanent NHS number through the Personal Demographic
Service; and
- Systems are maintained to treat patients under
a separate, pseudonymous NHS number where this is necessary. (Paragraph
241)
Security, reliability and consent
34. The
resilience of new systems will be enhanced by distributing data
across a range of hosting centres. Suppliers assured us that systems
will be distributed in this way but the impact of the power failure
at the Maidstone data centre, which affected 80 trusts, suggests
otherwise. We recognise that lessons have been learned from the
Maidstone incident. Nonetheless, we recommend that Connecting
for Health instruct suppliers to publish details of all significant
reliability problems along with a full incident log. (Paragraph
242)
35. The sharing of
unique smartcards between users is unacceptable and undermines
the operational security of DCR systems. However, we sympathise
with the A&E staff who shared smartcards when faced with waits
of a minute or more to access their new PAS software. Unless unacceptably
lengthy log-on times are addressed, security breaches are inevitable.
We recommend that Connecting for Health:
- Ensure that suppliers have
clear plans for achieving access times compatible with realistic
clinical requirements for all of their systems; and
- Continue to monitor the potential for introducing
more sophisticated access systems, such as facial pattern recognition,
in busy areas such as A&E. (Paragraph 243)
36. The
Department has indicated that explicit consent will be required
before DCR information can be shared between separate organisations.
The Committee supports this approach and recommends that the consent
model for the shared DCR be communicated to patients as clearly
and as early as possible. (Paragraph 244)
37. However, if sensitive
information is to be stored and shared on DCR systems, it is important
that local "sealed envelope" systems are developed and
tested as soon as possible. We were concerned to hear that suppliers
have not yet received specifications for local "sealed envelopes".
We recommend that Connecting for Health provide such specifications
as a matter of urgency and set a clear timetable for the introduction
of this technology at a local level. (Paragraph 245)
The Secondary Uses Service
38. The
Secondary Uses Service (SUS), which succeeded the NHS-Wide Clearing
Service, has for some years helped to improve the health service
by providing access to and analysis of data for commissioning,
management and audit purposes. However, the development of the
SCR and DCR will allow access to clinical data which are timelier,
better integrated and of a profoundly higher quality than those
currently available. This will transform the SUS and offers significant
benefits, most notably for health research. In particular, if
the highly detailed data captured by DCR systems can be made available
through the SUS then the possibilities for new and improved research
are outstanding. (Paragraph 280)
39. The Department
has acknowledged the need to take advantage of the research opportunities
offered by the SUS and has established a partnership with the
UK Clinical Research Collaboration to achieve this. We welcome
this, but researchers nevertheless told us that much more could
be done to maximise these opportunities. We recommend that Connecting
for Health:
- Mandate the use of the unique
patient identifier, the NHS number, in all health service interactions
in England;
- Develop appropriate linkage between databases
within and beyond the SUS. This would also have benefits for non-research
activities such as health protection;
- Ensure that the development of clinical information
standards, which we recommended in Chapter 4, takes account of
the needs of research; and
- Initiate a campaign of public engagement so that
both the opportunities and risks from using health data for research
purposes are better understood. (Paragraph 281)
40. Increasing
access to health data brings new challenges for safeguarding patient
privacy. It is therefore vital that the systems which regulate
availability of, and access to, data through the SUS are safe
and effective. Governance systems must strike a difficult balance
between the need to protect patient privacy and the need to take
advantage of the increasing availability of data, between safeguarding
individual rights and promoting the public good. Unless such a
balance can be struck, there is a risk either that the potential
of the SUS will not be realised, or that public confidence will
be damaged. (Paragraph 282)
41. There are a number
of weaknesses within current access and governance systems. While
explicit patient consent is the ideal means of allowing access
to data, it is often impossible to ask for consent in practice,
particularly for studies using historical data. Pseudonymisation
is a good idea in principle, but full pseudonymisation is only
possible in some situations because potentially identifying data
are often needed for effective research. It follows that some
research will continue to require access to partially pseudonymised
data in situations where obtaining explicit consent is impossible.
However, the Patient Information Advisory Group (PIAG), which
considers such requests, remains a temporary body. PIAG has attracted
criticism both for its processes and for its decisions. (Paragraph
283)
42. There is an urgent
need to address these problems, especially as the amount and type
of data potentially available through the SUS will proliferate
rapidly in future. We recommend that the Department of Health
conduct a review of both national and local procedures for controlling
access to electronic health data for "secondary" uses.
In particular, the review should examine:
- How best to balance the opportunity
to improve access to data for research purposes with the ongoing
need to safeguard patient privacy;
- Whether to establish a national Information Governance
Board to oversee the arrangements for access to data for secondary
uses;
- The case for establishing a permanent body to
succeed the Patient Information Advisory Group and whether this
should be a subcommittee of the national Board;
- The effectiveness of the pseudonymisation process
proposed by Connecting for Health and its suppliers, which should
be subject to independent public evaluation;
- What compensating controls, such as third party
brokerage, should be used to protect patient privacy in situations
where research must be conducted with partially rather than fully
pseudonymised information; and
- How governance arrangements for access to data
for research purposes should differ from those which apply to
other "secondary" purposes, such as immigration and
counter-terrorism. (Paragraph 284)
