Evidence submitted by the Department of
Health (EPR 01)
EXECUTIVE SUMMARY
The National Programme for IT in the NHS is
already providing essential services to support patient care and
the smooth running of the NHS, without which it could not now
properly function. Installation of a modern, high speed, secure
infrastructure and national network has been completed ahead of
schedule and is daily supporting millions of business transactions
in the NHS. Key systems have been successfully deployed on time
and are benefiting patient care. Widespread coverage of Community
Patient Administration Systems has been achieved where nothing
existed before. Over half of hospitals now have digital X-rays
and scans. At the heart of the National Programme is the NHS Care
Records Service which will in due course provide a lifelong electronic
personal health record for NHS patients in England.
The Summary Care Record will go live in early
adopter sites in Spring 2007. Development of the more detailed
care record continues. Safeguards for patients have been built
in to protect confidential information, including controls they
can choose to exercise themselves and advanced technological standards.
The safeguards were designed following substantial research and
consultation with patients and the public as well as the NHS and
other interested parties.
Benefits will accrue to patients and the NHS
from the introduction of modern IT systems and the supporting
national network, enabling clinicians to share information about
patients and with patients. Medical errors and harm to patients
arising from inadequate information will be reduced; inefficiency
and waste will be curbed and better information will be available
to improve the understanding of health outcomes and needs.
We are developing electronic records with continuous
input from patients/carers/citizens. We are taking great care
to ensure that the public will be properly informed at key stages
of what is happening to their personal health information and
the choices they have to control access to it.
Full transformation to a digital NHS will be
achieved in the next few years.
Patients have already begun to see the benefits
provided by the NPfIT implementations:
— Patients are now able to choose an
appointment at a time and location convenient to them.
— Patients benefit from a reduction
in booking time which means their GP can focus on providing better
care.
— Patients will no longer need to visit
their GP to collect repeat prescriptions and can have them sent
electronically to their chosen pharmacy.
— Doctors are able to make a quicker
more efficient patient diagnosis using digital images and x-rays.
— Patients will no longer need to wait
extended periods of time to receive their results and start treatment
which is especially critical for conditions like cancer.
— There will be a reduction in safety
incidents where the patient was allergic to the treatment given
as a result of a missing or illegible referral letter.
— An increase in the accuracy of patient
records meaning correspondence letters are sent to the right address.
— GPs will be able to begin diagnosis
immediately as they will have the patient's historical medical
record to hand.
— All parents of new born babies can
be confident that their baby's personal information is available
at the touch of a button anywhere ensuring doctors can provide
the best care possible.
— By removing some of the unnecessary
delays to patient care, the programme will offer patients a quicker
discharge from hospital and better, safer overall care.
MANAGING INFORMATION
ABOUT PATIENTS
1. In a typical week, over six million people
visit their GPs, 800,000 people are treated in hospital clinics,
and thousands of operations are performed. This corresponds to
around 3 million critical processes per day that need accurate
patient and clinical information to be immediately available.
The National Programme for IT is developing and implementing an
overarching, secure information system, using multiple new and
existing IT components, to enable important patient related information
to be accessible where and when it is needed in the NHS Care Records
Service (NHS CRS).
2. When supported fully by a single electronic
records system, these 3 million critical processes will result
in approximately 30 million transactions per day over a cohesive,
robust and resilient infrastructure. An effective national information
technology system is a central plank of NHS modernisation, essential
to the Government's vision of plurality of provision within the
NHS. The deployment of modern IT is essential to deliver the Government's
vision of reform in the NHS and bring about greater quality, safety
and efficiency of patient care; the Choice agenda, and greater
empowerment of patients, can only be fully realised with the adoption
of nationally integrated systems. Today the NHS could not function
without the systems which have been delivered by the National
Programme for Information Technology since 2004.
3. A key part of the system which underpins
the NHS Care Records Service (NHS CRS) is the National Network
(N3) for the NHS. The Network (N3) is now integral to the daily
running of the NHS, with the data equivalent of 24,000 copies
of the Encyclopaedia Britannica sent over the high speed, secure
network every day. Over 18,500 locations are now connected, providing
the infrastructure to allow clinicians to securely access information
on patients, including scans and images from any location, at
any time. The network is the largest Virtual Private Network (VPN)
in Europe and once completely deployed will be the largest in
the world.
4. On a typical day in March 2007, the National
Programme for IT already enables:
— 100,000 prescriptions to be transmitted
electronically, reducing errors and inefficiencies. This represents
around 10% of the total and is set to rise steeply in the coming
months.
— 16,000 Choose and Book electronic
bookings to be made, putting patients in charge of their care.
90% of GPs have made electronic bookings and 37% of all bookings
are being made electronically.
— 1,200,000 queries to be processed
on the patient demographic system, enabling letters to be posted
to the correct address and patient information to be handled more
efficiently.
— 540 new users to be registered for
access to the NHS Care Record Service.
— 50,000 unique authenticated users
to access the NHS Care Records Service.
— 200 new NHS secure email users to
be registered.
— 109,000 NHSMail users, each of whom
has an email address for life, to send 1 million secure emails,
one third of which contain confidential patient information.
— 10 New National Network (N3) secure
broadband connections to be installed.
— 8,800 GP practices (33,000 GPs) to
use the Quality Management Analysis System to deliver better care
to patients under the new GP contract.
— 1 million records to be added to
the Secondary Uses Service.
In an organisation as large and diverse as the
NHS, it is neither feasible nor affordable to undertake a wholesale
replacement of existing IT systems. This puts a greater emphasis
on standards, integration and compliance to enable interoperability
between multiple IT systems. There have been 102 existing systems
accredited for connection to NPfIT services to date, which are
operating across over 10,000 locations with tens of thousands
of users handling millions of transactions a week. The total cost
of accreditation is estimated to be £6.3 million since 2004
of which £5.1 million has been allocated to Suppliers' resource
costs. A Common Assurance Process (CAP) will be extended to cover
all systems and improve their quality so that they may be connected.
The first phase of CAP is already underway to support the Early
Adopter sites. The National Programme is designed to promote the
secure availability of information across the NHS to support patient
care efficiently and safely.
THE CASE
FOR AN
ELECTRONIC PATIENT
RECORD
5. "People will, increasingly, expect
an integrated system that looks after patients' needs providing
an efficient hassle free service. Innovations such as the Electronic
Health Record will fuel such expectations; patients are likely
to be less accepting of requests for repetitive information or
communication weaknesses"—Wanless interim report http://www.hm-treasury.gov.uk/media/44F/3F/wanless_chapters_7to8.pdf
Preventing medical error and harm to patients
6. There is hard evidence of the problems
of using traditional paper records. The root cause of 27% of medication
errors is poor information availability. 1,200 people die each
year in England and Wales as a result of medication errors—almost
a third of the number killed on the roads in the same period—costing
the NHS £500 million a year.
7. There are many examples of medical error
and the harm resulting to patients where traditional record keeping
is at fault. Examples include:
— During the calendar year 2006 almost
1,700 patient safety incidents were reported to the National Patient
Safety Agency where the patient was allergic to treatment given,
over 900 where the patient suffered an adverse drug reaction,
and over 800 where the primary cause was put down to a missing,
inadequate or illegible referral letter, with around 29,000 where
this was a factor. The introduction of the NHS Care Records Service
(NHS CRS) will help reduce these errors and prevent harm to patients.
— Up to 5,000 patient procedures are
cancelled each year due to lost X-rays and patients are often
subjected to harmful repeat X-rays as a result. The introduction
of Picture Archiving and Communications Systems (PACS) under the
National Programme for IT in the NHS will help to substantially
reduce this.
— Similarly, when fully implemented
and integrated with the Summary Care Record, the Electronic Prescriptions
Service (EPS) should enable up to 3,000 adverse drug reactions
to be avoided, with a saving of some 1,000 lives and around 25,000
bed days each year.
8. Currently, electronic records range from
a detailed general record capturing clinical detail at the primary
care surgery, through specialist clinical databases for particular
areas of care, to the more general patient administration record
created and held at the acute and secondary care hospital. In
the main, the various classes of electronic health records are
maintained separately and with no electronic linkage between them.
The NHS did not until recently have a single, reliable, definitive
means of recording and sharing up to date patient demographic
information.
9. Instead of having individual health records
in all the different places patients receive care, NHS organisations
which normally work together will in future be able to share a
Detailed Care Record for each patient. Detailed Care Records will
be developed over several years and patients will also have a
Summary Care Record, available to those treating the patient anywhere
in England. At first, the Summary Care Record will contain basic
information such as allergies, adverse reactions to medications,
and current prescriptions. In due course more information will
be added, and discussions are ongoing about the content of these
records.
10. The absence of up to date information
about patients can have damaging consequences. "Providing
clinicians with simultaneous access to accurate patient records,
quality-assured knowledge and details of local care pathways is
key to ensuring safe and effective healthcare in the future. With
changes in patterns of work and increased patient mobility...
the Electronic Health Record, has much to offer patients in a
healthcare system in which they may be the only constant. (CMO
July 2006 report." "Good doctors, safer patients").
Some examples are provided below (see paragraphs 8-11).
Shared care needs shared information
11. Modern healthcare is delivered by teams
of healthcare professionals who need to share essential information
to provide safe, effective care. Locally held records depend on
local filing, archiving and retrieval processes, all of which
are subject to human error and can prevent appropriate and timely
sharing of information. Locally held records can be lost or inaccessible
when they are needed, and cannot easily reflect different confidentiality
ratings for different parts of the record to meet individual patient's
wishes. Lost medical notes, missing information about appointments
and concerns about lack of information at times of medical emergency
are frequently cited as a problem (source: BMA discussion paper
2005 "Confidentiality as part of a bigger picture").
Typically patients have different medical records in existence
in different institutions that are difficult to coordinate, and
often are not shared. Patients are often repeatedly asked for
the same information.
12. Shared record systems, such as those
being delivered by the National Programme, provide more complete
data and lead to the delivery of better patient care. Evidence
from environments where they are already routinely available and
used shows that the number of failed appointments falls because
hospitals have accurate and up-to-date addresses for patients.
The number of duplicate diagnostic procedures and tests reduces
so that patients do not have to undergo repeat X-rays, reducing
their risk of excess radiation. Importantly, patients benefit
from knowing their records are up-to-date.
13. Continuing changes to the ways in which
care is provided in the NHS—the restructuring of evening
and weekend arrangements in primary care, and the growing contribution
of the private and voluntary sector—will only underline
the shortcomings of traditional approaches to records keeping
and management. Staff will increasingly work as members of a multi-disciplinary
team. The traditional divisions between primary and secondary
care and specialty based practice are being challenged. Joint
working between health and social care providers will continue.
The future is likely to see professionals delivering care to specific
patient groups rather than in specific health care settings. All
this will have a striking impact on the premium placed on the
availability of reliable information at the point of contact with
the patient, irrespective of time, place, or care setting.
Reducing inefficiency and waste
14. The risk to life and wellbeing is compounded
by inefficiency and waste resulting from the reliance on traditional
record systems. Up to 10% of appointments are currently not attended,
leading to re-scheduling. Similarly, traditional local records
for patients are manually maintained and stored, costing the NHS
£120 million per year to create, maintain and store. Fragmented
and partially integrated systems are the norm—over 8,500
different systems exist, none of which is secure enough to transfer
patient information.
15. Major examples of areas in which the
introduction of modern IT systems and support can help reduce
inefficiency and waste include:
— In 2005-06 the NHS Litigation Authority
paid out some £560 million in settlement of clinical negligence
claims, much of it, as in previous years, on an uncontested basis
because records that might have made it possible to defend claims
could not be produced locally.
— The introduction of Picture Archiving
and Communications Systems (PACS) can help a typical hospital
save tens of thousands of staff hours a year previously required
to locate and move films around the site and elsewhere in the
NHS, and hundreds of thousands of pounds on the cost of X-ray
films and processing, and by releasing storage space for better
alternative uses. There is also significant potential for much
greater savings arising from service redesign, reduced waiting
times, and better, faster diagnosis.
— The Electronic Prescriptions Service
(EPS) will eliminate the need for the prescription details to
be typed manually from hand-written prescriptions by the dispenser,
allowing them more time with patients. It will also eliminate
the 2 million per year prescriptions which are returned to pharmacies
for reimbursement queries, and the need for patients to visit
a GP for a repeat prescription. As 70% of all prescriptions are
repeat prescriptions, this could result in a reduction of up to
1 million patient visits a year.
Empowering patients
16. The creation of the Care Record Service
will put control of care records into people's own hands. Patients
will be able to view and review their summary record via HealthSpace.
It will enable patient choice of treatment or clinician and provide
access to Choose and Book. It will allow patients to record their
preferences for care and to identify errors in their record. It
will enable them to choose how their records are shared.We continually
involve patients/carers/citizens in the development of the NHS
Care Record Service to ensure it meets their needs. They are involved
through research and consultation. They sit on project boards
and reference panels. They form advisory committees and attend
workshops. They read and comment on materials we produce for the
public.
Improved understanding of health outcomes and
needs
17. Information is essential for providing
care but is also important for public health, research, and to
improve the quality of care processes and management. Data can
be retrospectively examined to identify practice patterns, incidence
of disease or complications, and the like. It can also be used
to target specific practitioner behaviours where there is scope
for improvement.
18. The NHS Care Records Service (NHS CRS)
also provides information for these "secondary" purposes
as part of a coherent strategy to improve the quality of healthcare
delivered by the NHS in England. The current approach to supporting
these secondary purposes is fragmented, variable and historically
dependent upon access to confidential identifiable patient information,
a situation which the Department of Health has been working with
the Patient Information Advisory Group to improve. The NHS CRS
will provide access to rich but anonymised or coded information
and unprecedented tools for utilising this information to analyse
outcomes, trends and performance to support improved future care.
SPECIFIC ISSUES
RAISED BY
THE COMMITTEE
Question 1. What patient information will
be held on the new local and national electronic record systems,
including whether patients may prevent their personal data being
placed on systems
Clinical Information
19. The recording of clinical information
is a matter for professional regulation and will also depend in
part on policies and protocols in local NHS organisations. Doctors
are required by the General Medical Council to keep clear, accurate,
legible and contemporaneous patient records which report the relevant
clinical findings, the decisions made, the information given to
patients, and any drugs or other treatment prescribed, and which
serve to keep colleagues well informed when sharing the care of
patients. Other health professionals have similar obligations.
Demographic Information
20. Patients' demographic details are already
held in the Personal Demographics Service (PDS), a key component
of the NHS Care Records Service. It is estimated that in the region
of 3.5 million patients per annum change GP Practices and for
an increasingly mobile population, and with an ever more diverse
range of NHS healthcare providers, the PDS provides a consistent
accurate source of demographic information. This includes items
such as:
21. Currently, in a typical week, 6.5 million
messages are processed by the demographics service which is accessed
on a typical NHS day by 50,000 authenticated unique users. The
total number of queries to date now exceeds 230 million. As a
result of the central personal demographics database some three
quarters of a million letters per year are now correctly addressed.
The introduction of the Personal Demographic Service (PDS) at
University Hospital Birmingham has seen a reduction from 3% of
misdirected letters down to 0.44%, improving overall accuracy
rates for patient correspondence to 99.56%.
22. Access to the Personal Demographics
Service (PDS) will reduce clinical risks arising from a failure
to match patients with their clinical record, and help minimise
cases of correspondence and documents being misdirected. Currently,
some trusts send tens of thousands of misdirected items of mail
a year, and nationally the figure runs into millions of items.
Early evidence from one trust has shown a six-fold reduction in
misdirected mail addressed using data held in the Personal Demographics
Service (PDS), with a saving in postal and staff-related costs
that would translate into many millions of pounds nationally per
year.
23. People registered with the NHS will
not be able to prevent their basic demographic and contact details
from being held within the NHS CRS. The NHS has maintained registers
of its service users from the earliest days of its existence and
for a variety of reasons to support the delivery of healthcare.
Regulations require the NHS to keep a record of which GP practice
each person is registered with and reasons of efficiency and probity
require this to be held centrally (eg to prevent multiple GPs
from being paid for the same patient and to ensure that the correct
commissioning body meets the cost of care provided). A register
is also needed to enable the Secretary of State to meet legal
obligations to provide healthcare, free at the point of contact,
for those patients who are ordinarily resident in England.
24. However, whilst it is not practicable
to give patients choice about whether their demographic details
will be held in the system, safeguards have been built into the
PDS which allow an individual's contact details to be hidden from
NHS staff if they request this level of protection. Access to
the Personal Demographics Service (PDS) by NHS staff is restricted
to those issued with a smartcard and an appropriate role.
Summary Care Record
25. The Summary Care Record forms the national
element of the NHS Care Record Service and will provide authorised
healthcare professionals with access to key clinical information
about a patient anywhere at any time. Piloting of the Summary
Care Record, part of the NHS Care Records Service (NHS CRS), in
"early adopter sites" will begin from Spring 2007. The
ready availability of information about patients in the Summary
Care Record will help prevent medication errors which cause 1200
unnecessary deaths a year in England and Wales—almost
a third of the number killed on the roads in the same period—and
a human tragedy costing the NHS £500 million a year. It will
also help reduce unnecessary admissions to hospital particularly
of older people The Summary Care Record will be created by copying
data currently held within GP systems with the agreement of the
GP Practices concerned. At first, the Summary Care Record will
contain only basic information such as known allergies, known
adverse reactions to medications and other substances (eg, peanuts)
acute prescriptions in the past six months and repeat prescriptions
that are not more than six months beyond their review date.
26. In due course more information will
be added about current health conditions and treatment. "Adverse
drug reactions (ADRs) continue to represent a considerable burden
on the NHS, accounting for one in 16 hospital admissions and 4%
of the hospital bed capacity. Most ADRs were predictable from
the known pharmacology of the drugs and many represented known
interactions and are therefore likely to be preventable. Over
2% of patients admitted with an adverse drug reaction died, suggesting
that adverse effects may be responsible for the death of 0.15%
of all patients admitted" (Source: BMJ abstract of research
at two general hospitals in Merseyside—BMJ 2004; 329:15-19).
Discussions are under way with representatives of the medical
professions, patients and the public about the final scope and
implementation of the Summary Care Record. Experience in the early
adopter sites will be thoroughly evaluated before wider roll-out
of the Summary Care Record.
27. Individuals who have concerns can choose
not to have a Summary Care Record created for them. They will
be advised to inform their GP of their views and to request that
a note be made of their concerns and the choice they have made.
The GP practice may ask the patient to sign a form indicating
that they understand and accept that it may not be possible for
the NHS to provide them with the same care as others receive in
circumstances where the Summary Care Record will enable improved
care. They can alternatively choose to have a Summary Care created
but not accessible to anyone but themselves. They will be able
to access it anytime using a secure internet site called HealthSpace.
Patients will of course be able to change their mind and request
a Summary Care Record at any point.
Detailed Care Record
28. Records containing information about
a patient's medical care exist currently in a variety of places,
for example, at their GP surgery or at hospitals where they have
received treatment but at present they cannot easily be shared.
Over the next few years, as the NHS Care Records Service (NHS
CRS) develops, NHS organisations such as hospitals, clinics and
GPs will be able to share their electronic records where appropriate.
This may vary from area to area depending on the physical infrastructure.
A patient who has attended NHS organisations in different areas
may have more than one set of shared detailed records.
29. The detailed care record component of
the NHS Care Records Service (NHS CRS) will support the care process
and will typically contain:
— Name, address, date of birth and
NHS Number.
— Past and current health conditions,
allergies.
— Assessment, investigations and diagnosis
including test result and digital images.
— Care plans and reminders.
— Treatments including operations and
medications.
— Care reviews and discharge information.
30. Individuals may ask those who are providing
care for them whether or not it is possible to withhold information
from the new IT systems but in many cases this will be impracticable.
Some forms of care, X-rays, laboratory tests etc will generate
records within the new systems automatically and the only way
to prevent this is to choose not to have that particular care
or treatment. Where clinicians feel that they can keep adequate
records outside of the new systems there will need to be robust
arrangements for clinical audit in order to assure the quality
of care and protect patient safety. The Department of Health is
to conduct a consultation on processes for managing patient requests
of this sort. However, even where information has to be held within
the new systems, patients have considerable control over who may
access that information as described below. Alternatively, people
can choose to have their information held electronically but not
accessible to anyone outside the organisation that created it—thereby
recreating an electronic version of the status quo.
Question 2. Who will have access to locally
and nationally held information and under what circumstances
31. Only the duly authorised staff of organisations
that are involved in providing care will have access to confidential
medical information held within the NHS Care Records Service (NHS
CRS). Such staff will need to have a "legitimate relationship"
(see paragraph 37) to access the information in an individual
patient's record. Organisations that are not involved in providing
or supporting the delivery of health and social care, will not
have direct access to any confidential medical data. Exceptionally,
disclosure outside a health context may be considered in cases
of serious crime or where there are significant risks to other
people, but public interest rules for disclosure to the police
or other agencies are not changed by the introduction of the NHS
Care Records Service (NHS CRS). This is exactly the same as what
happens now with paper records and non-linked computer systems.
32. Arrangements known as "role based
access controls" will limit what a member of staff can do
within the system and consequently which parts of a record he
or she can see and amend. Access to record content will therefore
be controlled by a member of staff's professional relationship
with the patient, and by what they need to see to do their jobs.
Senior clinicians within an organisation will also be able to
see patient records when assuring the quality of care provided
by their staff, but other access will only be authorised when
required or permitted by law.
Question 3. Whether patient confidentiality
can be adequately protected
33. The benefits of the NHS Care Records
System (NHS CRS) for both patients and NHS staff depend on safeguarding
sensitive patient information from inappropriate disclosure. The
NHS Care Record System provides a set of technical access controls
and audit facilities that, along with the professional standards
of staff in the NHS, safeguard sensitive patient information from
inappropriate disclosure. They provide much more rigorous controls
than exist now for either paper records or existing electronically
held records.
34. The Department of Health sets stringent
standards for patient confidentiality and has taken the lead in
government in developing a comprehensive privacy statement in
the form of the NHS Care Record Guarantee, articulating in plain
language precisely what NHS organisations must do to meet legal
and policy requirements. The Department is also strongly supporting
the Information Commissioner in seeking stronger penalties for
breaches.
35. International security standards are
applied across all system implementations. These include the use
of encryption to communication links between systems, and to user
interfaces with systems. The security of data centres is assured
using both international and British standards, and all suppliers
to the National Programme are contractually bound to auditing
their adherence to these.
36. The NHS Care Records Service (NHS CRS)
incorporates stringent security controls and safeguards to prevent
unauthorised access to personal information and to detect potential
abuse. These controls are complex to implement and there is a
trade-off between usability and ease of access to data and questions
relating to security and patient safety. The Department is therefore
proceeding cautiously and consultatively and is providing the
NHS with a set of security tools to deliver centrally determined
standards.
37. The Department is aware that some patients
will not be reassured by NHS security controls and is therefore
providing patients with choice about participation in many of
the new developments. Uniquely, the Department is also providing
security controls that are set at the direction of patients. This
provides unprecedented confidentiality management for patients
of the NHS in England.
38. The Department of Health is establishing
a National Information Governance Board answerable to the Secretary
of State for Health, to provide a single authoritative source
of monitoring, oversight and advice on the use of information
in health and social care. The NIGB will review compliance with
the NHS Care Record Guarantee and report annually to the Secretary
of State. It will subsume the roles of a number of existing Department
of Health Committees. With increased availability of patient information,
it is important to safeguard access and to retain the confidence
of the public. The NIGB will prevent complacency by adapting and
maintaining high standards and by being ever watchful and in touch
with public perception.
Security Controls Managed by the NHS
39. Users (healthcare professionals) are
vetted and sponsored by their local organisations for specific
access appropriate to their job role and area of work. There is
a strong registration process compliant with the government standard
eGif level 3 which means the user has to initially appear in person
to prove their identity before access is assigned by the "Registration
Authority" governed by NHS Connecting for Health. On successful
completion of the registration process, a user is issued a smartcard—a
secure token that, together with a passcode, confirms the identity
of a user at the time of access. The registration process assigns
them a role profile consistent with their area of work and responsibilities
and establishes a unique electronic footprint when used to access
systems. These records can be analysed to identify suspect behaviours.
Where suspect behaviour is identified, local trusts will follow
their procedures for investigating staff.
40. No system functionality will be available
to an individual who does not possess a smartcard and know the
associated pass code. The role profile that has been assigned
to an individual through the registration process determines which
system functions, and consequently which parts of a record, an
individual who has logged on to the system can access.
41. A central record is also maintained
within the systems of which patients each staff team—workgroup—are
currently caring for. A GP Practice, an A&E Department or
a clinic would be typical workgroups. This relationship, termed
a "legitimate relationship" (LR) is a prerequisite of
access to a specific patient's record. Without such a relationship
access is prevented.
42. Full audit trails of who has done what,
made possible by the unique identity associated with each smartcard,
are maintained within systems and it is intended that these will
be available to patients on request, as well as to staff charged
with checking for system misuse by authorised staff. This is a
considerable advance on what exists now with either paper or electronically
held records.
43. NHS organisations must undertake to
observe strict conditions to ensure the NHS CRS is used appropriately,
and users are required to sign up to a set of conditions for use
of the smartcard. These obligations and conditions are complemented
by the various existing codes of conduct and professional responsibilities
by which all NHS staff are bound. Actions which do not conform
to them, which includes the sharing of smartcards, are dealt with
locally. Sharing of information between members of a team has
happened routinely prior to the introduction of smartcards, but
we recognise that the sharing of smartcards could undermine the
assurance that patient confidentiality will always be appropriately
respected. Staff who breach patient confidentiality are subject
to professional disciplinary measures. Offending doctors and nurses
will be reported to their professional regulatory bodies and may
face additional disciplinary action, including losing their licence
to practice.
Options and Controls Available to Patients
44. Patients have a number of options. They
were developed following extensive research and consultation with
patients/carers/citizens and the NHS:
(i) Not to have a Summary Care Record (SCR)
by requesting this through the GP Practice where they are registered.
Individuals who opt-out of having a SCR may change their minds
at any point in the future. Electronic prescriptions and electronic
bookings are also optional.
(ii) To direct that controls are set to prevent
data sharing. In this case the SCR can only be viewed with the
individual's express permission or in accordance with the exceptions
to English common law confidentiality obligations. Local sharing
of Detailed care records across organisational boundaries will
also be prevented—essentially recreating the pre-NCRS situation.
(iii) To have their address and contact numbers
hidden so that they are not available to NHS staff. Whilst the
NHS is legally required to hold non-clinical patient contact details
for all patients where these can be obtained, this option has
been provided so that even the most concerned individuals can
still receive care and have joined-up records.
In time, patients will also be able to have
an SCR but to designate some data items as sensitive so that they
cannot be viewed outside of the team that recorded the information
without the individual's express permission. This type of control
is referred to as a "sealed envelope".
Question 4: How data held on the new systems
can and should be used for purposes other than the delivery of
care eg clinical research
45. The primary purpose of the NHS Care
Records Service (NHS CRS) is to support the delivery of care to
patients. However, as a by-product of collecting information for
operational patient care, the introduction of the NHS Care Records
Service (NHS CRS) represents a major opportunity for supporting
the secondary analysis and reporting of information for a variety
of purposes. The architecture of the NHS Care Records Service
(NHS CRS) provides the opportunity to rationalise data abstraction,
data flows, data management, analysis and reporting. This supports
management and clinical purposes other than direct patient care,
such as healthcare planning, commissioning, public health, clinical
audit, benchmarking, performance improvement, research and clinical
governance. The system by which this is done is called the Secondary
Uses Service (SUS).
46. Wherever possible, data will extracted
automatically as a by-product of NHS services supporting direct
patient care, including the NHS Care Records Service (NHS CRS),
Choose and Book and Electronic Transmission of Prescriptions.
Initial Secondary Uses Service (SUS) content will cover the NHS
in England and will be patient-specific. It will build on operational
information already being shared by the NHS such as commissioning
of healthcare services (eg diagnosis and procedures), cancer waiting
times, clinical audit and supporting demographic data. Data will
in due course cover all care settings (primary, community and
acute) and all NHS-commissioned activity, including services provided
for the NHS by the independent sector.
47. The aim is for this data to be made
available either in aggregate form or, where detailed information
is provided, in anonymised or pseudonymised form. This process
removes patient identifiable information and allocates a consistent
"pseudonym" so that individual cases can still be tracked,
but only with explicit approval.
48. Access to identifiable information is
available only where patient consent has been given, or where
specific permissions apply. Permission is required from an expert
group called the Patient Information Advisory Group (PIAG), set
up under the Health and Social Care Act (2001). This group assesses
each application to test that the use of patient information is
justified, taking into account issues of confidentiality and consent.
49. Access to the Secondary Uses Service
requires each user to be formally registered and to use individual
smart card access, just as for other systems in the National Programme
for IT in the NHS. Each user is allocated a role which determines
the functions (ie what reports they can access) and the coverage
(eg the organisation or geography of data which may be accessed).
Key user activities, eg, logon and performing an extract, are
logged.
50. In January 2006, the new national health
research strategy Best Research for Best Health announced
that the Department of Health would ensure the capability exists
within the national NHS IT system to facilitate, strictly within
the bounds of patient confidentiality, the recruitment of patients
to clinical trials and the gathering of data to support work on
the health of the population and the effectiveness of health interventions.
The UK Clinical Research Collaboration established an expert group
under Professor Ian Diamond, Chief Executive of the Economic and
Social Research Council, to advise NHS Connecting for Health on
maximising the use of the NHS Care Record for research. It has
simulated how clinical trials and large observational studies
could draw on the NHS infrastructure, and will report shortly.
51. The Secondary Uses Group set up by the
Care Record Development Board to advise on the ethical use of
patient data and how the potential for research, statistics and
management can be realised without compromising confidentiality
or security is due to report shortly.
Question 5. Current progress on the development
of the NHS Care Records Service and the National Data Spine and
why delivery of the new systems is up to two years behind schedule
Current Progress on Development
52. Growth in volumes of activity on National
Programme Systems is rising dramatically with the increase in
functionality across the NHS Care Records Service (NHS CRS) and
continuing roll out of the various elements of the system. Already
the spine is the world's biggest structured healthcare messaging
system. It is significantly larger than the entire Reuters global
network used to distribute financial data in real time. The processing
power of the spine environments would put it in the top 100 supercomputers
ever built. Over 300 terabytes of storage is held on the spine
which is roughly equivalent to a 3,000km long book shelf. The
national PACS programme will ensure that all acute trusts will
have the technology in place by the end of 2007, with the South
having already achieved this target and London on target to achieve
this by the end of March 2007. By the end of 2007, every GP and
community pharmacy in England will have access to the Electronic
Prescription Service (EPS).
53. Alongside progress in delivering the
technology have come measurable patient benefits:
— The Picture Archiving and Communications
Systems (PACS) means images can be accessed remotely in any place
and at any time by consultants, making care better, more attentive
and diagnosis quicker than before. Patients will be assessed and
treated more quickly in emergency care situations, and consultants
can conduct more thorough examinations with the ability to manipulate
images onscreen resulting in the best possible diagnosis. Lost
or deteriorated images will no longer be an issue, saving money
and time wasted due to cancelled or inadequate consultations.
Space currently used for the physical storage of images will be
reduced in this near-filmless process, with all the flexibility
of digital systems.
— Virtually all GPs maintain electronic
health records for their patients. GP systems are connected to
a fast modern and secure national network over which are transmitted,
electronic bookings and prescription scripts all using a central
register of demographic data to ensure safety and available across
the NHS 24/7. Comparative performance and quality measures of
the services provided by GP practices are available to the public
and healthcare planners.
— Electronic prescriptions have improved
accuracy in prescribing. As well as saving lives by reducing prescribing
errors, the electronic prescription service improves efficiency.
— Choose and Book is delivering patient
choice, but also saving nursing and clinical time by reducing
"Did Not Attends" by around a half, whilst most bookings
are made in under a minute.
— Payment by Results and the Quality
Outcomes Framework (QOF) has incentivised performance.
— The Quality Management Analysis System
(QMAS), collects data on the Quality and Outcomes Framework (QOF)
component of the new General Medical Services contract for general
practices. The aim is to improve care standards by assessing and
benchmarking quality of care. The QOF rewards practices for the
provision of quality care, and helps to fund further improvements
in the delivery of clinical care. QMAS represents a valuable source
of information for healthcare managers or researchers responsible
for the planning and delivery of primary care services and resource
allocation, either within organisations or nationally in respect
of specific disease areas. This unique quality-of-service information
is available to the public to look up information on how well
their local surgery performs. Other searches will compare local
GP practice scores against other GP practices in the local area
and the national score across England. QOF data provides, for
the first time, easy access to comprehensive information on the
pattern of the most common chronic diseases such as asthma, diabetes
and cancer, from over 8,400 GP practices with just over 53 million
registered patients in England. QOF helps doctors to compare the
delivery and quality of care. By providing this world-leading
intelligence on the spread of illnesses such as diabetes, heart
conditions and cancers, GPs and other health professionals can
make improvements in managing these chronic diseases.
— The Personal Demographics System
is reducing the very significant numbers—some three-quarters
of a million a year—of letters sent to the wrong address.
— The GP2GP records transfer system,
which provides a secure way for GPs to pass the records of a patient
who has changed GPs to the new GP quickly and safely. GP2GP makes
a process that can take months to complete using paper records
into one which is effectively instantaneous.
Delivery of the New Systems
54. There has been substantial progress
with many systems fully deployed and daily supporting critical
NHS business. The NHS could not now function normally without
the Quality Management and Analysis System (QMAS), the N3 broadband
network, the Personal Demographics Service, Picture Archiving
and Communications System (PACS) or Payment by Results. Other
programmes, such as Choose and Book and Electronic Prescriptions,
have seen the software delivered to time and budget but take-up
has been slower than expected. In both cases, roll-out has been
dependent on the goodwill of existing system suppliers to achieve
compliance and to undertake the work to install the upgrade.
55. Although much of the NHS Care Record
Service was delivered on time and to budget, including the Personal
Demographics System, Security and Authentication Systems and Messaging
Systems, the national Summary Care Record containing the clinical
record has been delayed by around two years against the original
plan. This is partly due to its complexity and partly because
of the need to secure consensus from the medical profession on
its contents. The medical profession has been divided, with GPs
typically favouring less or no clinical information to be placed
in the national summary record and hospital doctors wishing there
to be more information. Consensus was achieved by the Ministerial
Taskforce on the Summary Care Record. The software is now on track
for deployment at the end of March 2007.
56. Significant progress has been made at
a local NHS level by the installation of community and child health
systems into Trusts that have not had any previous IT support
and where managers and clinicians have praised the transformation.
57. The deployment of new IT systems into
acute hospitals with existing Patient Administration Systems,
non-standard LANS, WANS and firewalls and multiple interfaces
to a myriad of Departmental systems is up to two years behind
the original schedule. Unlike the successful PACS deployment which
has effectively been into greenfield sites, the patient and clinical
systems implementations are into acute hospitals with existing
legacy systems. Rather than providing a standard, repeatable deployment,
the individual requirements, particularly for reporting at the
local Trust, has required greater effort and has taken longer.
58. As at 12 March 2007, the position across
major elements of the programme is as follows:
Picture Archiving and Communications
Systems
— two Picture Archiving and Communications
Systems going live almost every week (only five per year before
the programme);
— over 178 millions digital images
now stored;
— 5.4 million images are typically
added each week;
— c 40,000 patient studies per day.
Picture Archiving and Communications
Systems capture, store, distribute and display static or moving
digital images, including X-rays and scans. Over 178 million digital
images have already been stored. Currently there are 79 live deployments
and we are digitising around two hospitals each week. The Picture
Archiving and Communications Systems Business Case shows £1
billion net benefit, both cash and non-cash, to the NHS over 10
years. Trusts with Picture Archiving and Communications Systems
are more efficient—a typical medium hospital can save 100,000
staff hours, equivalent to 50 staff. Picture Archiving and Communications
Systems enables earlier diagnosis and more prompt treatment—providing
digital transfer of images as required. Before Picture Archiving
and Communications Systems, 5,000 patient procedures per annum
were cancelled due to lost X-ray films.
NHS Care Record Service
— 332,029 registered users;
— now contains national patient demographic
information for over 50 million patients in England;
— patient confidentiality protected
by a Care Record Guarantee and system controls; and
— over 1.2 million patient records
are successfully retrieved from the Personal Demographics Service
every day, helping to correctly identify patients.
The NHS Care Record Service is creating
an electronic record for each of England's 50 million patients,
replacing four existing national systems. There are already 333,029
registered users and over 550 million activity records have been
submitted to Secondary Uses Services. The NHS Care Record Service
will bring process efficiencies and improvements to patient safety,
care and experience, helping to reduce deaths through adverse
drug reactions, of which there were 570 in 2001-02, as well as
reducing the cost of litigation by reducing the number of avoidable
adverse incidents. The summary clinical record is now ready for
launch in April 2007.
Choose and Book
— over 2.9 million Choose and Book
bookings made to date;
— over 16,000 bookings made in a typical
day;
— now available to 97% of GP practices;
and
— software delivered to time and budget.
http://www.chooseandbook.nhs.uk/
GPs and other care staff are booking
initial hospital appointments at a convenient date, time and place
for patients. Currently, there are over 16,000 bookings made per
day and a total in excess of 2.9 million total bookings have been
made to date. 97% GP practices are able to make electronic bookings.Choose
and Book has been shown to halve the number of "did not attends"
by giving the patient choice and placing them in control of their
booking. Choose and Book will save the NHS approximately £69
million per year or 100,000 days per year of nursing and clinical
time. "Did not Attend" rates are 5% for Choose and Book
compared to 9% for non-Choose and Book bookings. Most bookings
are made in 44 seconds.
Electronic Prescription Service
— software delivered to time and budget;
and
— over 14 million prescription messages
issued.
The Electronic Prescription Service
will allow prescriptions generated by GPs to be transferred electronically
from their surgeries to their local pharmacies. Over 14 million
prescriptions have been transmitted to date and over 550,000 prescriptions
are issued per week. 1,669 GP practices have transmitted prescriptions.
The Electronic Prescription Service more than halves keying time,
by both the pharmacy and the Business Services Authority, equating
to £13M savings or 700 staff equivalents. The Electronic
Prescription Service will save an estimated eleven lives per week
and will free up 3,920 hospital beds per week by reducing prescribing
errors. The Electronic Prescription Service brings more choice
in access to medication including home delivery and involves less
time for GPs administering repeat prescriptions by 70%. Electronic
Prescription Service data will be used to populate the patient
summary care record.
National Network for the NHS (N3)
— target achieved two months ahead
of schedule with over 18,000 connections delivered.
N3 is providing reliable supporting
IT infrastructure, world class networking services, sufficient,
secure connectivity and broadband capacity potential to meet current
and future NHS IT needs. There are 18,664 secure connections of
which 10,717 are GP connections. Approximately 1,000,000 NHS employees
use N3 services. All GP sites and branch practices get at least
512Kbps N3 service. For every £1 spent on N3 the NHS would
have spent £2.25 on the legacy NHSnet. By using N3 to monitor
four ambulance trusts, Yorkshire Air Ambulance has reduced scramble
time from seven to two minutes. N3 transfers 96.5 terabytes of
data per month which is equal to the Encyclopaedia Britannica
every four seconds. There are connections to all sites where healthcare
is offered.
NHSmail
— over 236,000 registered users; and
— around one million emails a day,
one-third of which are clinical information.
NHSmail is a centrally managed, secure,
clinical email and directory service provided free of charge to
the NHS organisation in England. Currently there are 236,652 registered
users. Over 205 million emails have been transmitted to date,
30% for secure transfer of patient identifiable data. University
City Hospital Leicester estimates £1 million saving over
four years equivalent to an extra ten nurses per year. All users
have one email account, contact details and diary that can be
shared across multiple organisations. NHSmail will save £185
million over the life of the contract. NHSMail is a secure service
with the highest level of encryption available.
The Quality Management and Analysis
System (QMAS)
QMAS is a new single, national IT
system, which gives GP practices and PCTs objective evidence and
feedback on the quality of care delivered to patients. As general
practices are now rewarded financially according to the quality
of care they provide, it is essential that the payment rules that
underpin the GMS Contract are implemented consistently across
all systems and all practices in England. QMAS ensures that this
is achieved. The system shows how well each practice is doing,
measured against defined national achievement targets.
Overall Position
59. The technology to support most aspects
of the National Programme for Information Technology has already
been delivered and the remaining challenge is to utilise these
systems fully at local level.
CONCLUSION
60. Having access to comprehensive and secure
electronic health records has been shown to improve quality of
care and patient safety and facilitate appropriate treatment of
patients in providing health professionals with a better knowledge
of the patient's history and of previous interventions by other
colleagues. A longstanding commitment by the Department of Health
to give patients access to information about their health and
care will become a reality. The National Programme for IT and
the NHS Care Records Service (NHS CRS) have the potential to transform
and save lives. They will enable better informed patients to work
in partnership with the NHS.
61. Currently, the NHS operates with disparate
paper-based and fragmented national IT systems. Many of these
inefficiencies are being removed and better services for patients
are available as a result across the NHS. Modern IT Systems and
the Services described here will support access to care when and
where it is convenient, reducing the numbers of failed appointments,
improving the accuracy and handling of prescriptions and facilitating
the capture, storage and transmission of X-rays and digital images
so they are available to clinicians when and where needed. The
implementation of a secure broadband network will improve the
communication and availability of information to clinicians and
managers; patients too will be able to view the information held
about them, putting them in control for the first time and offering
meaningful choice. They will also have unprecedented control over
who sees their information. Crucially, the NHS Care Record Service
(NHS CRS) will provide a single integrated national system for
all NHS clinical applications, with consequent improvements in
efficiency and patient safety, care and experience.
62. The transformation from paper to digital
information will take place gradually up to 2010 and beyond. The
NHS will move from being an organisation with fragmented, partially
integrated national systems, with physical processing and storage
of records on paper which are often unavailable when required
or incomplete to a position where national systems are fully integrated,
record keeping is digital and patients have unprecedented access
to their personal health records. There will be a move from existing
paper-based systems to modern IT based flows of information at
every level in a careful progression from the Summary Care Record
to the full NHS Care Records Service (NHS CRS), supported by a
universal, secure physical IT infrastructure. We have in the past
and continue to involve patients/carers/citizens in the development
of electronic records.
63. Information about the National programme
for IT in the NHS can be found on the following web site—http://www.connectingforhealth.nhs.uk/
Department of Health
March 2007
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