Coronary Heart Disease and Stroke: STRATEGY FOR SCOTLAND
5 Information Technology and the Development and use of Databases
58. The report of the national Acute Services Review (June 1998) pointed to 'the pressing need for a coherent national database if the NHS in Scotland is to make rational provision for patients with coronary heart disease'. Accurate data are vital if the local cardiac services and stroke MCNs and SCIN are to address unmet need and provide comprehensive services. This would allow the Executive to meet the commitments in its response to the final report of the Bristol inquiry; to develop greater scrutiny of NHS performance and to make increased information available to the public on the quality of care delivered by NHSScotland.
59. There are two clamant needs:
The creation of national databases for CHD and stroke are therefore fundamental to the implementation of the approach set out in this Strategy.
CHD NATIONAL DATABASE
60. Routinely collected data currently available through SMR1 provide information on: the total numbers of hospital admissions with CHD and stroke, length of stay, limited information on casemix and case fatality. However, routinely collected data provide little information on the organisation or process of care (which provide the most direct indicators of quality) and do not permit adequate adjustment for casemix (disease severity) to allow valid comparison of outcomes.
61. As highlighted in the Task Force Report, there is a need to build on the information currently available from routinely-collected data collated by the Information and Statistics Division (ISD) of the Common Services Agency, e.g. Clinical Outcomes Reports. Better information is required to monitor progress against this Strategy and to help drive improvements in quality of care. The CSBS has identified standards for CHD secondary prevention and is currently developing (in parallel with development of this Strategy) standards for vascular and stroke services. However, there is an acknowledged lack of data to indicate service performance against these standards.
62. The widespread introduction of Hospital Information Systems (HIS) which incorporate patients' electronic medical records and which link to information systems in primary care (GPASS and other systems), would fulfil our future information needs. However, this long-term solution is unlikely to be available in the time scale for development defined in this Strategy. The Reference Group therefore recommends the establishment of systems of data collection, storage and management which will support the development and monitoring of CHD and stroke services and will meet the Quality Assurance needs of MCNs. Although the implementation of such information systems will vary between NHS Boards and MCNs, the Reference Group strongly recommends the adoption of nationally-agreed datasets with standard definitions. The considerable work already undertaken in both CHD and stroke needs to be consolidated and appropriately funded.
DEVELOPMENTS IN THE ESTABLISHMENT OF A NATIONAL CHD DATABASE
63. The Task Force Report clearly identified the urgent need to develop a CHD database in primary care, linked to secondary and tertiary care, if the CHD 'databases jigsaw' was to be completed. Since the publication of the Task Force Report, SEHD has worked with ISD, the Royal College of General Practitioners (RCGP) and other groups to achieve this aim.
64. In recent years the RCGP has developed the Scottish Programme for Improving Clinical Effectiveness in Primary Care (SPICE PC). Three of the areas covered so far include hypertension detection and management, the secondary prevention of ischaemic heart disease (IHD) and the management of people with type 2 diabetes, many of whom will have IHD. The criteria developed are embedded in care management screens in GPASS, and other software programmes such as the Clinical Decision Support System (CDSS) now in widespread use across primary care in Scotland. The CHD Minimum Dataset (MDS) developed by the Task Force is essentially compatible with the suggested data items in the SPICE Programme. It is also consistent with the standards in the illustrative model for quality payments included in the new GP contract, currently under negotiation.
65. Although many GP practices will already be collecting CHD data broadly in line with the recommended Task Force MDS, the feasibility of sharing such data more widely needs to be demonstrated. Central funding has therefore been allocated for a pilot study, initially in 6 GP practices over a period of 3 months, which ISD will take forward in conjunction with Scottish Clinical Information Management in Primary Care (SCIMP) under the umbrella of RCGP. ISD will provide support for practices in collecting the MDS, with the ultimate aim of establishing a CHD register in those practices capable of sharing data more widely. A complementary initiative in Tayside has shown the feasibility of sharing the MDS data in 50 practices, and the ability to use electronic records of people with diabetes to populate automatically screens for other conditions, such as CHD.
66. To underpin collaboration between these initiatives, ISD propose to establish a Working Group whose membership will include individuals who have been involved in rolling out the national diabetes IT system (SCI-DC) and dataset (which again is in broad agreement with relevant data items in the Task Force MDS). The Working Group will be asked to devise the national shared care dataset for cardiovascular disease. This will extend the MDS to incorporate terms necessary for the direct care of people with CHD. The group will ensure consistency of terms and coding with existing initiatives, including the MDS, SCIMP, SPICE, SCI-DC and CDSS. It will also advise on the technical options for roll-out of primary care CHD registers once the evaluation of the ISD pilot study and other options is concluded. As emphasised in the Task Force Report, the ultimate aim must be that such data are generated as a by-product of routine patient care. GPASS practices that participate in the SPICE programme as part of their chronic disease management will already be using Care Management Screens or CDSS to collect these data as part of their routine consultations. The publication of a national shared care dataset for cardiovascular disease in Scotland will also assist practices that use other clinical systems to develop similar templates for chronic disease management. Practices undertaking Practice Accreditation will be able to use the CHD register to fulfil relevant criteria.
67. The Reference Group recommends that following completion of pilot studies to demonstrate the feasibility of using the recommended CHD MDS in primary care, the ISD Working Group should calculate the cost of rolling out the findings across NHSScotland, as part of the establishment of the national CHD database. SEHD should then fund this development.
SCOTTISH CLINICAL INFORMATION (SCI) CHD
68. It was always recognised that rolling out SCI CHD across NHSScotland would be a major undertaking. Technical development of the system is well advanced and the major need is now for product champions - at both clinical and management levels. The Reference Group believes that this would most appropriately be undertaken by those participating in cardiac services MCNs, particularly the Lead Clinician and Network Manager. Supporting the development of SCI CHD should therefore be included in the job descriptions for these individuals.
69. The Reference Group believes there would be considerable merit in focusing in the short and medium term on the Electronic Clinical Communication Implementation (ECCI) CHD discharge document which links closely to SCI. This automatically generates Read codes for discharges and transfers this information (together with information on drugs) to GPASS and other primary care IT systems. The benefits of focusing on the ECCI discharge document would be:
collection of relevant data demonstrating compliance with the CSBS standards for secondary prevention of AMI;
provision of seamless patient care;
automatic updating of CHD databases in primary care;
automatic sharing of clinical information according to the national datasets on people with CHD who also have diabetes; and
making available past discharge letters within the patient's SCI Store record, for access on occasions such as subsequent A&E attendances.
70. The Reference Group therefore believes that the existing SCI User Group should be strengthened and refocused to develop the ECCI CHD discharge document (which in due course could be used as a template for other clinical specialties) as a matter of priority. Thereafter the User Group could focus on other elements of SCI CHD.
71. The Reference Group recommends that:
The focus in terms of SCI CHD should be on development and promulgation of the ECCI CHD discharge document. The SCI User Group should be reconstituted by December 2002 and asked to undertake this task as a matter of priority; and
Lead Clinicians and Network Managers of cardiac services MCNs should undertake the role of product champions of SCI CHD and in particular the ECCI CHD discharge document. This should form part of the job description of Lead Clinicians and Network Managers.
INTEGRATION OF EXISTING DATABASES
72. In line with the recommendation in the Task Force Report, ISD is preparing a costed proposal to SEHD for a 3 year work programme which aims to meet future needs by integrating existing CHD databases including:
Scottish Cardiac Surgery Database;
Scottish Coronary Angioplasty Database;
Scottish Coronary Angiography Database; and
Hospital SMR1 Dataset and elements of the SMR20 Dataset.
The proposal will also cover provision for including primary and community care data.
73. The Reference Group recommends that by October 2002 SEHD should give urgent, positive consideration to the proposal from ISD to establish a work programme aimed at integrating all existing CHD databases and expanding them to cover primary and community care data.
74. Once all the strands of activity covered in this section of the Strategy have come to fruition, the Reference Group believes that Scotland will have moved much closer to a truly national CHD database.
NATIONAL DATASETS TO SUPPORT STROKE SERVICES
75. As highlighted in the CHD/Stroke Task Force Report, a great deal of work has been done over the last few years in Scotland which will underpin efforts to collect data to monitor the performance of stroke services.
The Scottish Stroke Collaboration, under the auspices of the Intercollegiate Committee on Quality and Standards, has developed and agreed draft standards which are evidence-based and relevant to patients;
CSBS will have agreed national standards for vascular services and stroke care within a few months. Good data collection will be essential to monitoring performance against these standards;
The Scottish Stroke Collaboration has also agreed minimum data sets which will inform performance against many of these standards;
under the auspices of the Scottish Intercollegiate Guidelines Network (SIGN), multidisciplinary groups, including physicians, nurses and Allied Health Professions, have developed and continue to refine the SIGN guidelines for stroke. These have provided an excellent, evidence-based, description of the optimal process of care;
Chest Heart and Stroke Scotland has developed a stroke strategy which closely reflects the views of professional groups, but has also taken account of research to find out the views of patients and their carers. This strategy was subjected to scrutiny by patients' groups throughout Scotland prior to publication; and
computer software has been developed to facilitate relevant data collection by stroke services. A pilot version is being used in Aberdeen, the Royal Infirmary of Edinburgh, the Western General Hospital, Edinburgh and St John's Hospital, Livingston (and their associated rehabilitation units) as well as those referred to the neurovascular clinics in Lothian. It has been designed to be compatible with other NHS systems (e.g. patient administration systems) and to use common codes. The use of a common data collection system will help to promote standardised data definitions across organisations. The system developed for stroke has used ISD definitions wherever possible, but could be modified to incorporate Read codes. The system also appears to comply with most of the high level requirements for the SCI clinical system.
76. CRAG has approved the funding of a proposal from the Scottish Stroke Collaboration, which builds on all of these initiatives and which aims to introduce a national system to:
routinely monitor the performance of Scottish hospitals against nationally agreed standards for stroke care identified by the Scottish Stroke Standards Group and the CSBS;
monitor progress against goals set by this Strategy;
facilitate an ongoing programme of national time-limited audits of specific aspects of stroke care directed by the Scottish Stroke Collaboration;
enhance the value of routine outcome indicators for stroke by collecting data which allow fuller adjustment for variations in casemix;
improve the accuracy of routinely collected hospital discharge data; and
drive improvements in the organisation and delivery of stroke care and encourage sharing of good practice and adherence to best evidence.
77. The Reference Group recommends that:
all hospitals which routinely admit patients with acute stroke should introduce systems to facilitate the collection of a nationally-defined minimum dataset for each patient admitted, in order to allow monitoring of performance against nationally agreed standards;
all hospitals which routinely admit patients with stroke should join the pilot phase of the CRAG project to establish a National Monitoring System for hospital-based stroke services. Hospitals will need to identify a lead clinician for this project as well as staff to ensure complete data collection. Where an IT system already exists, resources should be identified to ensure its compatibility with nationally-agreed methods and datasets;
if the pilot phase is successful, the system should be established as an ongoing National Audit. Part of this should be funded centrally and the remainder should be funded from contributions from participating Trusts; and
further development work should be resourced to establish the feasibility and methods of linking the hospital-based systems with those in primary care, to allow capture of information relating to longer-term management of stroke patients and outcome. This work should be led by the stroke MCN in each area. The overall aim must be to create an integrated national database for stroke, drawing as appropriate on the lessons learned from the development of the national CHD database.