Select Committee on Health Written Evidence


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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