Evidence submitted by the Association
of Directors of Social Services (ADSS) and the Association of
Directors of Children's Services (ADCS) (EPR 21)
1. EXECUTIVE
SUMMARY
1.1 The Electronic Patient Record must be
understood in the context of the Government's programme, firstly,
for the modernisation of public services and, secondly, the vision
to place the citizen and the citizen's needs at the centre of
public service delivery.
1.2 The strategy is set out in the Cabinet
Office publication, "Transformational Government—Enabled
by Technology" (Cabinet Office 2005). The aim is to use information
systems and technology as a key means of meeting "each of
the three major challenges which globalisation is setting modern
governments—economic productivity, social justice and public
service reform" (Transformational Government, Cabinet Office
2005 p 2).
1.3 A patient-centred health service requires
joint working between health and social care. This must be supported
by the capacity to share information across traditional organisational
boundaries. The vision is set out in the White Paper, "Our
Health, Our Care, Our Say: a new direction for community services"
(published Department of Health 2006).
1.4 The Government's target is that by 2008
"we would expect everyone with both long-term health and
social care needs to have an integrated care plan if they want
one. By 2010 we would expect everyone with a long-term condition
to be offered a care plan" through joint health and social
care teams supported by "an information system that supports
a shared health and social care record" (Our Health, Our
Care, Our Say).
1.5 These targets are achievable within
the timescales set out in the Government's strategy. However,
progress in meeting these targets is constrained by a lack of
co-ordination between those Government departments which are responsible
for the development of personal electronic care records.
1.6 In some respects, the NHS has made most
progress in establishing the necessary infrastructure by establishing
a Care Record Guarantee. Furthermore, the NHS, through Connecting
for Health, has established standards for confidentiality, for
authorisation and verification of NHS staff who are entitled to
access to confidential patient information. The NHS Information
Standards Board ensures consistency of data definition and information
standards across the NHS. These standards are essential to ensure
data has the same meaning across the organisation.
1.7 However, there is not an equal commitment
from the Department of Health and the Department for Education
and Skills to ensure consistency of standards and of the structure
of electronic care records between the NHS, adult social care
and children's information systems. Nor is there a co-ordinating
framework to ensure consistency within these cross-Departmental
programmes. Consequently, this is a threat to the successful implementation
of the electronic patient and social care records.
1.8 To promote effective implementation
of the Electronic Patient Record, within the context of the requirements
of "Our Health, Our Care, Our Say" and the Transformational
Government strategy, it is recommended that:
1.8.1 Government establish a cross-Departmental
Board with authority to ensure consistency in the development
of personal care record systems across the NHS, adult and children's
social care services.
1.8.2 That this Board be responsible for
the consistent implementation of personal care record standards,
confidentiality guarantees and quality systems relating to personal
electronic records.
1.8.3 The implementation of the Electronic
Patient Record be promoted by the Department of Health by giving
a greater emphasis to the implementation of integrated health
and social care systems and, in particular, to promote national
implementation of the Single Assessment Process and Common Assessment
Framework, which are care components of the Electronic Patient
Record and Electronic Social Care Record.
2. SUBMISSION
FROM THE
ASSOCIATION OF
DIRECTORS OF
SOCIAL SERVICES
(ADSS) AND THE
ASSOCIATION OF
DIRECTORS OF
CHILDREN'S
SERVICES (ADCS)
2.1 The members of ADSS are responsible
for the management of social care services for adults throughout
Local Government. The members of ADCS are responsible for the
management of all children's services within Local Government.
2.2 Increasingly, social care services are
provided in partnership with the NHS.
2.3 The submission has been drafted on behalf
of ADSS and ADCS by the social care representative on the NPfIT
National Board who is also chair person of the Department of Health
& Electronic Social Care Implementation Board. He is also
chair person of the ADSS committee which has responsibility for
information systems and standards, and chairs a forum of independent
social care systems suppliers.
3. What patient information will be held
on the new Local and National Electronic Records Systems, including
whether patients may prevent their personal data being placed
on systems
3.1 The Government's vision is for citizen-centred
public services designed around the needs of the individual. One
of the key strategies to achieve this transformation is through
improved information systems and electronic records. The citizen
or patient should not have to repeatedly provide information to
a range of different people about their care needs. There should
be a single, electronic care record which provides the information
needed to deliver effective and efficient health and social care
systems. Therefore, essential information required within an electronic
patient record is:
3.1.1 standard demographic data about the
individual;
3.1.2 information about those organisations
and professionals involved in his or her care;
3.1.3 information about the individual's
needs;
3.1.4 the treatment provided to meet those
needs, and
3.1.5 finally, the record should contain
information about outcomes of that treatment programme.
The care record must be linear over time so
that past history can be examined and it must also contain current
need and treatment plans from all of those involved in that individual's
care programme.
3.2 Consistent with the vision to break
down barriers between traditional organisations, the electronic
patient record must contain full and comprehensive health care
information and have the capacity to interface with social care
systems. This requirement is set out in the National Service Framework
for Older People which established the requirement to provide
a Single Assessment Process. This expectation for older people
is being carried across to other adults through the development
of a Common Assessment Framework for all adults, which is one
of the requirements of objectives set out in the Department of
Health White Paper "Our Health, Our Care, Our Say : a new
direction for community services".
4. Who will have access to Locally and Nationally-held
Information and under what circumstances?
4.1 Person-centred care will, in most circumstances,
be multi agency and multi-disciplinary. The White Paper "Our
Health, Our Care, Our Say" sets the target that "everyone
with both long-term health and social care needs to have an integrated
care plan" by 2008 and that these integrated care plans will
be provided through "an information system that supports
a shared health and social care record". The White Paper
envisages such care to be provided by "joint health and social
care teams". There is an increasing body of evidence of the
effectiveness of such integrated teams in terms of reducing unplanned
hospital admissions, reducing prescribing costs and demands made
on general practice. Supporting people in the community through
integrated care teams places more responsibility and authority
on the patient and carer to manage their own health care needs
with demonstrable beneficial outcomes for patients.
Therefore, the people who need to have access
to the health and social care records are the members of the multi-disciplinary
team. What needs to be determined is who are the designated members
of the multi-disciplinary team. This might vary according to each
case, and also be dependent upon the views of the patient as to
who is entitled to have access to their confidential care record.
A simple guide to multi-disciplinary team membership is that if
a member is authorised to carry out assessment of the individual's
health and/or social care needs. If so, then that individual would
require access to the patient's health and social care record
insofar as he or she had a "need to know". There will
be some information which is within a "confidentiality envelope"
where access is restricted to certain team members either because
of the nature of the information or because of the restriction
on access to that information imposed by the patient.
4.2 There would need to be agreement between
the NHS, the Department of Health with its social care responsibilities
and DfES in relation to children's information systems as to the
level of electronic care record assessment which would be deemed
to come within the restrictions of a multi-disciplinary team approach.
The DfES approach to development of children's information systems
takes a universal approach to electronic records with a very broad
accessibility to those records by a range of different organisations.
This introduces complexities for information sharing where more
detailed, confidential information is held on an individual. This
could be managed by setting the level of multi-disciplinary working
at the Integrated Children's System rather than in the children's
Index or Common Assessment Framework which are more universal
in their concept.
5. Whether patient confidentiality can be
adequately protected
5.1 The key to protecting patient confidentiality
is to be specific about the level of electronic record which is
subject to the terms of the Care Record Guarantee. The Guarantee
can be applied to those electronic care records which are selective,
not universal in their nature; which are undertaken by accredited
professionals who have been vetted, authorised and appropriately
trained in the details of confidentiality and information sharing;
who are members of accredited teams and are individually authorised
to have access, on a need-to-know basis and subject to the approval
of the patient.Health The information systems must be capable
of monitoring who has had access to an individual's care record
and when. This level of protection and guarantee of confidentiality
is in excess of that which exists currently in practice in relation
to paper-based records.
6. How data held on the new systems can and
should be used for purposes other than the delivery of care, eg
clinical research
6.1 Data which is held in electronic care
records can be anonymised and aggregated for the purposes of clinical
research. It is possible to do this using standard techniques
such that an individual would not be identified.
6.2 There is considerable capacity within
electronic records to undertake epidemiological studies which
would contribute significantly to shifting the focus of the NHS
away from an acute treatment mode into more positive, more effective
programmes of promoting health and well-being and managing health
care problems within the community.
6.3 For example, people with chronic health
problems who experience ill health on a long-term basis are estimated
to account for between 30 and 40% of unplanned hospital admissions.
Treatment of long-term conditions takes up a significant amount
of NHS and primary care resources. Research evidence demonstrates
that long-term conditions can be better managed in the community,
that the patient and carer are capable of taking an active role
in health management and that, as a consequence, there is a reduction
in unplanned hospital admissions, take up of acute hospital beds
and a reduction in demands on prescription and GP time. Having
person-centred electronic care records would enable health and
social care services to target programmes aimed at more effective
management of long-term conditions within the community and, at
the same time, provide a basis for anonymised comparison using
random control groups. Strategic approaches such as this were
envisaged in the Wanless Report "Securing our Future Health
: Taking a long-term view" (HM Treasury 2002).
7. Current progress on the development of
the NHS Care Record Service and the National Data Spine and why
delivery of the new systems is up to two years behind schedule
7.1 It is not within my area of expertise
to comment on aspects of the Care Record Service or National Data
Spine being behind schedule. However, with reference to the introduction
of a comprehensive Electronic Patient Record it is my understanding
that the target date for the introduction of this record and its
capacity to interface with social care systems is between 2008
and 2010. These are also the dates set out in the White Paper
for the introduction of integrated teams to support long-term
conditions management. The tools have already been developed which
can deliver these objectives within the time frame 2008-2010.
These are the Single Assessment Process, elements of the Electronic
Patient Record and the Electronic Social Care Record.
7.2 The Single Assessment Process is a core
module of the Electronic Patient Record and of the Electronic
Social Care Record. Implementation of the electronic Single Assessment
Process so that it feeds into the Electronic Patient Record and
the Electronic Social Care Record without dual entry by health
and social care professionals and enabling real time access to
the electronic care record by accredited professionals will deliver
a very high proportion of the requirement to provide electronic
care records across health and social care. An electronic Single
Assessment Process could be implemented nationally within this
timescale. Connecting for Health has undertaken a review of the
strengths and weaknesses of the electronic Single Assessment Process
nationally and has made recommendations for its consistent implementation
across the country.
7.3 There are, however, several constraints
in delivering this achievable goal.The first constraint is that
there must be a consistency in the design and architecture of
electronic care records between the NHS, adult social care and
children's information systems. This requires the NHS, DH and
DfES to work collaboratively to ensure consistency of system architecture
and consistent standards across health, adult social care and
children's information systems. There is no co-ordinating framework
to ensure that the necessary consistency is achieved across these
systems. Underneath the strategic co-ordinating framework, there
needs to be a means to ensure consistency of information standards,
structure and definition of data, etc. Within the NHS, there is
a robust structure led by the NHS Information Standards Board
but there is not an equivalent body across children's and adults'
social care services to ensure an equivalent consistency. The
NHS programme, being implemented by Connecting for Health, is
constrained, therefore, in the extent to which it can safely integrate
the Electronic Patient Record with the Electronic Social Care
Record and the Integrated Children's System.
7.4 In the absence of such a co-ordinating
framework, it acts as a constraint on the development of the Electronic
Patient Record within the context of the Government's strategy
for the transformation of public services so that they are person-centred
and support flexible working across organisational boundaries.
Furthermore, in the absence of such a co-ordinating framework,
it is difficult to see that the targets set out in the White Paper
"Our Health, Our Care, Our Say" for the better management
of health and social care services through integrated teams and
supported by shared information systems will be achieved.
7.5 Considering the enormous investment
in information systems and technology being directed into health
and social care systems, this lack of co-ordination is running
the risk of "losing the ship for a ha'p'orth of tar".
David Johnstone
Devon County Council
On behalf of the ADSS and the ADCS
March 2007
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