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8 information collection and sharing
8.1 All agencies gather information from children and
families to enable them to decide how best to help, and to
keep records of their contact with children and families
including details of their assessments, plans for
intervention, treatment and support. Systematic data
recording and efficient information sharing is vital for
effective teamwork within and across agencies to implement
Hall 4 effectively.
Child health information systems
8.2 The current child health information systems are
well established, though with the exception of the Scottish
Immunisation and Recall System (
SIRS), they are not currently used in
all
NHS Board areas. They are primarily
clinical systems (as opposed to being merely data
collection systems) and provide useful support to
clinicians dealing with children. The paper forms, computer
input screens and output reports, upon which these systems
are based, require review and revision to support
implementation of
Hall 4. The systems will also need improved
communication with each other and with other systems.
Interim amendments are being made to the existing systems
to ensure compatibility with
Hall 4, and these will be in place by July
2005.
8.3 The Scottish Executive has established a Maternal
and Child Health Information Strategy Group (
MCHISG) to develop a strategic approach
to the development and implementation of integrated
information systems for children. This will involve
redesigning the child health systems, working towards a
single integrated record using modern technology. This work
will provide a clear direction for the development of child
health information systems, both in the light of
Hall 4, and also in recognition of clinical and
public health need for better information and communication
in child health. The
MCHISG has identified some key
priorities to be addressed including support for
Hall 4, information sharing within the
NHS and with other agencies, development
of an integrated child health record, support for patient
access to their information, and support for patient
transitions.
8.4 The
MCHISG has recently completed its first
report, with recommendations for the future of child health
systems over the next 5 years. The proposals include:
- A nationally agreed set of child health information
data standards.
- A single electronic integrated child health
record.
- National
CHI registration at birth.
- A national Child Health Surveillance Programme
clinical screening and surveillance system.
- Systems for clinical specialities and specialised
information requirements.
- A national maternity system.
8.5 The report will be presented to the e-Health Board
to inform national development of
IT and clinical information systems.
Effective monitoring
8.6 Current child health information systems provide
invaluable information about the uptake of screening
programmes, referrals of children with development problems
or disabilities, false negatives, and time lapses between
referral and diagnosis and between diagnosis and treatment.
It is important to keep under review age at diagnosis,
false positive rates, waiting times at each point in the
network of services and differences between age of
diagnosis for high risk and low risk cases. The development
of a single electronic integrated child health record
discussed above will support this monitoring.
Information collection
8.7 Systems for recording, storing and retrieving
information gathered from children and families or
generated in the course of professionals' work provide:
- A record for the clinician or practitioner of the
work undertaken and the outcomes to assist their
ongoing work with the family, and to ensure they are
accountable to their patient or client, to their
profession, and to their employing organisation or
equivalent.
- Aggregate information about presenting conditions
and problems, what was done and the outcome to assist
managers and planners to assess needs and plan
services.
- Information for families about their child's health
status and treatment or care.
8.8 As indicated in the previous section of this
guidance, the Scottish Executive will be consulting on an
Integrated Assessment Framework, intended to secure more
consistency in the type and format of information gathered
about individual children, and to support more effective
information sharing. This links with and will build on
current eCare pilots, funded through the Modernising
Government Fund (
MGF), which are developing
IT systems for exchanging and making
effective use of information to ensure more integrated
support for children and young people. They are also
developing change programmes around ways of working across
agency boundaries. The Scottish Executive is working with
local authority and health partners in Aberdeen, Glasgow,
Dumfries and Galloway and Lanarkshire to pilot the
following:
- An integrated children's service
record to define and develop the structures
and standards for an integrated care record for
children, integrating health, social work and
education.
- An integrated assessment framework
that will allow the sharing of assessment information
between the partner agencies.
- A personal care record to provide a
secure store for the records of a child from health,
education, and social services and the Scottish
Children's Reporters Administration.
- A framework for sharing information about
children at risk to extend the technologies
and processes currently used to share information on
older people in Lanarkshire, to children with child
protection issues.
8.9 The eCare pilots are due to be completed in 2005.
The products and learning from these development projects
will be made available on the eCare web site in due course
-
www.ecare-scotland.gov.uk
.
Information sharing
8.10 In order to identify and address children's
holistic needs, information sharing within and across
agencies is vital.
8.11 One of the aims of eCare is to develop systems and
procedures that will ensure that as many barriers to
information-sharing as possible are removed. eCare is much
more than an
IT solution. It is about ensuring that
organisation and cultural change also occurs to enable
practitioners to feel comfortable in using the tools and in
sharing information across agencies.
8.12 Health professionals should inform and advise
parents and, where appropriate, children, that to provide
proper care, information is recorded in written records and
on computer. Each organisation involved in a child's care
should be able to give parents, carers and children
information about how data is collected, how it is stored
and shared, and the safeguards in place to ensure that only
those who need it will have access to patient or client
information. Sharing information between professionals and
agencies should be based on parental consent unless there
are concerns about a child's welfare or safety which would
override patient confidentiality.
8.13 The Scottish Executive is developing guidance for
health professionals on consent and confidentiality issues,
which will be published for consultation. This will include
advice on the capacity of children and young people to make
decisions for themselves and circumstances in which there
is a difference of opinion between a child or young person
and their parent.
8.14 In the meantime, the Executive has already
published good practice guidance
74 on sharing information about children at risk for
health professionals and other agencies working with
families. A one-page summary
75 has also been published. This stresses that if there
is concern that a child may be at risk of harm, this will
always override a professional or agency requirement to
keep information confidential. It also advises
professionals responsible for adults with serious illness,
including adults with severe mental illness, drug or
alcohol dependence or brain injury, that they should always
consider the impact on any dependent children.
NHS Boards should ensure that staff
across Divisions are familiar with the advice set out in
the summary good practice guide.
Information for families
8.15 National guidance
76 sets out the requirements for effective working in
partnership with parents. This depends on good information
for parents from professionals. Achieving partnerships with
parents and children in the planning and delivery of
services to children requires that:
- They have sufficient information at an early stage
both verbally and in writing to make informed
choices.
- They are aware of the various consequences of the
decisions they may take.
- They are actively involved wherever appropriate in
assessments, decision-making, care reviews and
conferences.
- They are given help to express their views and
wishes and to prepare written reports and statements
for meetings where necessary.
- Professionals and other workers listen to and take
account of parents' and carers' views.
- Families are able to challenge decisions taken by
professionals and make a complaint if necessary.
- Families have access to independent advocacy when
appropriate.
The Parent Held Child Health Record
8.16
Hall 4 reviewed the use and content of the Parent
Held Child Health Record (
PHCHR), introduced a decade ago to
facilitate partnership with parents and empower them in
overseeing their child's development and health care.
Parents and health professionals make varied use of the
PHCHR. Whether professionals make
entries in the book or ask for it at health appointments or
at contact with services such as attendance at Accident and
Emergency Departments, is important to parents and
influences how they view the book.
NHS Boards should adopt the
PHCHR as a basis for recording
information on child health.
8.17 Each local health care system has tended to develop
is own version of the
PHCHR, which has undermined its
usefulness when families move from one area to another. A
UK working group has reviewed and
revised the
PHCHR in the context of the
recommendations made in
Hall 4.
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