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.
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.
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 .
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.