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SCOTTISH DIABETES CORE DATASET

Concept of Core Record

The aim is to create a core electronic record that resides on a central server (for each NHS Board area). Clinical staff with appropriate permission will be able to access the diabetes records of patients in their care wherever this care is delivered and view some or all of the contained information (see Concept of Views of the Data below). The core record will also be analysed to provide dynamic information for local audit and benchmarking as well as the details required for the annual Scottish Diabetes Survey.

By definition, this approach will generate a diabetes register that can also be used to furnish a call-recall system for diabetic eye screening.

Figure 1: The Scottish Diabetes Core Dataset and the architecture of diabetes data

Figure 1 makes it clear that the Scottish Diabetes Core Dataset does not, at present, incorporate all of the diabetes data that may be held on local systems which contribute information to the core record. This distinction is less obvious when the 'local system' actually constitutes browser access to the central record, but this architecture does not preclude there still being 'private' fields with only a subset being shared.

Thus, whether specialist data are held centrally or on systems in hospital or in primary care is irrelevant. What matters is the contribution to the core dataset and how this interaction is managed.

It is self evident that this dataset should not be construed as the entirety of data required for the care of a patient with diabetes. The test that was applied to proposed data items was, 'is this information essential to all those who may have to care for the patient without access to further information?'.

An obvious omission is the detail of Drug Therapy. Currently, this detail will be recorded on local systems but there is agreement that central recording should conform to the drug dictionary established for GPASS which is derived from the eVadis drug database supplied and maintained by ISD. The ultimate relationship to the evolving UK Clinical Products Reference Service (UKCPRS) remains to be seen.

Concept of Views of the Data

While this document details the elements of the Scottish Diabetes Core Dataset which potentially may be shared by health professionals, it is vital to understand that the actual data access that any individual obtains will be tailored and based upon function-related criteria (and patient preference). For example, a podiatrist would not be expected to have access to pregnancy-related information. This document is not about systems but suffice to say that the access control infrastructure will be managed at a local level.

Quite deliberately, no attempt has been made to apportion tasks to professional groups in relation to the population of the dataset. It is essential that local circumstances dictate best practice.

The inclusion of some sensitive data elements may cause concern. However, they need not be completed if patients would prefer this information to be maintained locally. These items are included in the dataset to allow sharing where this is deemed appropriate.

Summary of Changes

The current iteration has been coded (Read v2) to ensure compatibility with primary care systems. This is essential if these systems (principally GPASS) are going to be able to contribute to the dataset and/or incorporate elements from the dataset. Current national IM&T strategy suggests that there will be a transition to SNOMED-CT but this is not yet available in operational systems.

The original CRAG dataset comprised some 129 items while this version has 130. However, there have been significant changes to the Eye Screening section to reflect the work of the Health Technology Board for Scotland in preparation for a national diabetes eye screening programme. The pregnancy, childhood and dietetic sections have also been expanded but many of the items suggested by the subgroups set up to assist with the review process were felt to be too specialised for inclusion in the Scottish Diabetes Core Dataset. These items will, however, be incorporated within the SCI-DC development programme.

Next Steps

The immediate task is to roll out the SCI-DC elements across Scotland and to work with the SCI and GPASS teams and other suppliers (including CDSS) to facilitate contribution to this common dataset from all places from where diabetes care is delivered.

For NHS Boards, the Scottish Executive has made it clear in a recent circular - Developing services for people with diabetes, HDL (2002)81 - that all diabetes data collection systems in Scotland are expected, over time, to be compatible with this core dataset.

Developing the Dataset

It is self evident that diabetes does not occur in isolation and patients frequently may have other health problems e.g. cardiovascular disease. This poses real but surmountable challenges in relation to the evolution of integrated records - obviously data should be reusable so that once an item is collected, it is (potentially) available elsewhere.

In terms of dataset development, further additions and refinements will be made in the light of experience and to accommodate future data demands. Discussions with ISD are ongoing about how best to promulgate and maintain the diabetes dataset (and indeed other clinical datasets). In the meantime, SCI-DC will continue to provide the focus for dataset development. Comments about the dataset should be submitted to Dr Lorna Ramsay, Clinical Advisor, Data Intelligence Group, ISD Scotland, Trinity Park House, South Trinity Road, Edinburgh EH5 3SQ.

It is anticipated that this will be the last version of the dataset to be published in this way. In future, it is likely that the dataset will be made available only in electronic form.

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