Background
12.1 Recognition of the need for a National CHD Database in Scotland is not new. The Scottish Office Policy Review Group commented in 1996 on the fragmentary nature of CHD monitoring, and in particular the failure of current systems to measure the burden of CHD in the community and predict need for services. The Departmental CHD/Stroke Priority Action Team, which was established to take forward the recommendations of the Policy Review, commissioned a CSO-funded project, the Scottish Coronary Assessment Network (SCAN) which gathered information on current CHD data collection systems in Scotland, and provided an appraisal of possible options for the future. SCAN concluded that existing Scottish CHD datasets appeared patchy and fragmented and although reasonable for death and hospital data, were less good for community morbidity and risk factors.
12.2 More recently, the Report of the Acute Services Review identified "the pressing need for a coherent national database if the NHS in Scotland is to make rational provision for patients with coronary heart disease". Following publication of this report, the CHD Task Force assumed the development of a national database as one of its key priorities. The Clinical Standards Board for Scotland and the CHD Task Force have developed standards for secondary prevention following an AMI (see Section 13). This work has further emphasised the crucial need for a robust database in this area. Without sufficient and accurate data, it will be impossible for the CSBS to determine whether standards are being met. In addition, the work of the CHD Task Force's Needs Assessment sub-group has highlighted this issue. Progress has been hampered in this sub-group by the shortage of reliable data for CHD activity in the community.
12.3 Against this background the Database sub-group was set up with the remit:
"To develop a national database based on routine patient management data in primary care, drawing on existing datasets and work currently in progress on CHD data collection as appropriate."
12.4 It was clear from a summary assessment of databases, and from the SCAN project, that an enormous amount of information is already collected and collated on CHD in Scotland. However, a particular shortfall which has been identified is the dearth of information about the prevalence of CHD in the community. The point has been made that there is not only a need to link existing databases, preferably electronically, but also a need for an extra component which should be based in primary care. This would complete the CHD "databases' jigsaw" in Scotland. The Task Force recommends that the new national database should be made up of the following elements linked electronically:
12.5 There is widespread recognition, both in the Scottish Executive Health Department and NHSScotland, of the enormous actual and potential value of the databases covering cardiac surgery, angioplasty and angiography, started by Dr Jill Pell of Greater Glasgow Health Board. Resources are being made available to support and sustain this work and to link it with ISD activities.
12.6 SMR1 records details of NHS in-patient and day case discharges from Scottish hospitals. Patients receiving treatment for CHD are identified by the International Classification of Diseases (ICD) code in the main diagnosis field. SMR20 is the Scottish Cardiac Surgery Register which records details on all patients both treated and waiting at Scottish Cardiac Surgery Centres. It covers all heart transplants, children's heart surgery and almost all CABGs carried out on NHS patients in Scotland. ISD does not currently receive routine SMRI and SMR20 returns from relevant private hospitals in Scotland. The Task Force believes that such data should be available to ISD from this source.
Methodology
12.7 Having identified the lack of information about prevalence and management of CHD in the community as the major deficit in this area, the Group focused on the development of a new primary care-based CHD Database, bearing in mind the following potential uses for the Database which had been identified by the Task Force:
12.8 The Group fully recognised the low baseline from which CHD data collection in primary care is starting in Scotland and was clear that the Database would have to provide demonstrable benefits in terms of patient management to gain acceptance. It would therefore have to comprise routinely collected data in order not to impose an additional burden on hard pressed general practitioners. The minimum dataset (MDS) entry should not be onerous, but nonetheless the MDS should be extensive enough to be useful in practical (clinical) terms. The Group was confident that development of a truly national database will address and resolve the problems associated with current patchy CHD data collection in primary care.
12.9 It quickly became apparent that no existing database fully fitted the requirements identified by the Task Force as prerequisites for the primary care based element of the National Database. These included:
Primary Care-Based Database: The Way Ahead
12.10 An opportunity arose for the sub-group to take forward its aims in this area. Scottish Executive Health Department (SEHD) IM&T colleagues retained PA Consultancy to research the development of the GPASS system in Acute and Primary Care Trust settings. The question which this project was asked to address was whether new GPASS might provide a cost effective basis for the development of clinically useful hospital information systems, and if so, how that could be achieved. The sub-group was given the opportunity to influence the focus of this project. As a result, one of the two clinical areas being explored in the initial stages of the project was CHD (the other was diabetes). The desired outcomes identified for the project were:
12.11 The feasibility study demonstrated conclusively that GPASS has the potential for use within secondary care and more widely within primary care. This work is now being taken forward by the Scottish Clinical Information (SCI) Project.
Progress on Implementation
12.12 SCI is overseen by a Programme Board on which the CHD Task Force has representation. SCI has developed a range of products including:
The last two listed are of particular interest to the CHD Task Force.
12.13 The primary aim of SCI CHD is to provide support for clinicians managing patients with CHD, whether based in primary or secondary care. In the secondary care setting, the system will support the patient admission process by allowing the admitting clinician access to patient data held on the linked primary care system (with appropriate data protection measures in place). If for example the patient presents in Accident & Emergency with chest pain, the past history and most recent patient episodes will be accessible, and the database can be updated in real time. If the patient is then transferred, for example to CCU, it will be possible to view all recorded patient data in the unit, thereby facilitating transfer. Laboratory tests such as cardiac enzymes and troponins can be ordered in A & E and accessed via the SCI store once the patient is in CCU. The patient's medication record will also be recorded on SCI CHD, reducing the potential for prescribing error. At the time of discharge a letter will be generated automatically and sent electronically to the patient's GP.
12.14 SCI applications which integrate primary and secondary care aim to avoid double data entry and minimise the amount of work required to maintain the database in both primary and secondary care. This product links strongly to the Electronic Communication of Clinical Information (ECCI) out-patient booking and online referral project which is also under way. Integration of primary and secondary care systems means that GPs will be able to view secondary care episodes, and vice versa. SCI will also achieve seamless links, for example with the SCI out-patient management system. Although the vast majority of GP practices in Scotland use GPASS, the SCI application is not restricted to GPASS users, but aims to link any primary care IT system with secondary care in that area.
12.15 SCI products are now being piloted in a number of areas throughout Scotland, notably in the Royal Alexandra (RAH) in Paisley. Development of IT to support CHD care has been underway in RAH under the leadership of Dr Iain Findlay for some ten years. The main systems/modules cover:
12.16 Given the RAH's experience, SEHD has established a collaboration which is a key part of the SCI programme, to develop comprehensive and linked systems in support of the full spectrum of primary and secondary CHD care.
12.17 There is considerable interest in SCI products in other parts of Scotland, including Dumfries and Galloway where it is anticipated that SCI will improve communications within the pilot MCN for Cardiac Services. The proposed minimum dataset (see Appendix IX) which was devised by the Task Force relates to secondary prevention. It has now been refined and is being used by SCI to develop clinical screens, in conjunction with Scottish Clinical Information Management in Primary Care (SCIMP). While the Task Force is clear that the agreed minimum dataset must achieve universal coverage, it is also keen to allow flexibility for individuals or units with a particular need or interest to add fields for their own use.
12.18 The establishment of a national CHD database is clearly a pre-requisite for the assessment of performance against the CSBS standards. Unless hospitals can provide the necessary data to the CSBS, such assessment will not be possible. This will be equally true when the Board extends its activity to other aspects of CHD, including management in primary care.
Conclusion
12.19 The above developments bring nearer to fruition the completion of the CHD "databases jigsaw" referred to earlier in this Section. However, the Task Force recognises that the question of closer integration of the various parts of the jigsaw may require further exploration in the future by SEHD in conjunction with ISD.
Recommendations
12.20 The Task Force recommends that the new national database should be made up of the following elements linked electronically:
12.21 The Task Force recommends that continuing priority be given by SEHD and ISD to the full integration of existing CHD databases to develop a truly National Database. The Task Force believes that this is fundamental to the successful implementation of this Report. In the meantime: