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Scottish Diabetes Survey Summary
Action
Yours
sincerely |
Addressees For information General Manager, CSA
Enquiries to: _____________________________________ |
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SCOTTISH DIABETES SURVEY Background 1. Diabetes Mellitus is a common condition that probably affects over 100,000 individuals in Scotland. Type 1, or insulin dependent diabetes, occurs when there is destruction of the insulin producing pancreatic islet cells. Insulin injection therapy now allows most individuals with Type 1 diabetes to live normally. This type of diabetes can occur at any age but tends to affect younger people. There are around 250 new cases of Type 1 diabetes in children under 15 years of age in Scotland each year. Type 2, or non-insulin dependent diabetes, is twice as common and tends to affect individuals over the age of 40. In most cases blood glucose levels can be lowered by dietary measures and exercise although often tablets and occasionally insulin are needed. There is now good evidence that lowering blood glucose to near normal levels in diabetic patients reduces problems such as retinopathy leading to blindness, neuropathy leading to foot problems and amputation and nephropathy leading to end stage kidney failure and dialysis. Other problems such as heart attack, stroke and peripheral vascular disease are more common in both types of diabetes and not only does this cause increased morbidity and mortality, it places an increased burden on health and caring services. It has been estimated that around 5% of the total NHS budget and about 8% of acute sector costs are attributable to diabetes. 2. The St Vincent Declaration, published in 1989 and adopted by the UK and other European governments, was an agreement to work to improve the prevention, identification and treatment of diabetes. Amongst the more specific objectives were targets to:
The Declaration also recommended the establishment of monitoring and control systems using state of the art information technology for quality assurance of diabetes health care provision and for laboratory and technical procedures in diabetes diagnosis, treatment and self-management. 3. In 1996 the Scottish Intercollegiate Guidelines Network (SIGN) published a Recommended Minimum Dataset for Collection in People with Diabetes which sought to define the data required to monitor diabetes care both in terms of the outcome (end-point) indicators of diabetes (i.e. blindness, end stage renal failure, amputation, heart disease, and pregnancy outcome), as well as key indicators of the process of diabetes management which have been proven to influence long term outcomes. The original report and the subsequent revision (which was published in June 1998), have been widely read and well received in Scotland such that the SIGN dataset is now generally accepted as the core dataset for diabetes care. 4. In 1997 CRAG established a Diabetes Registers and IT Systems Steering Group to describe the current pattern of registers and IT systems, outline the facilities which clinicians caring for people with diabetes should expect from clinical support systems, consider what ought to be done in terms of registers and IT systems in order to meet the St Vincent Declaration targets and to produce a report with recommendations on the way forward. The Steering Group produced a Summary Report which was subjected to wide consultation including a national conference. Amongst the Steering Group's conclusions was the recommendation that a 'national diabetes register' should be set up. This idea was endorsed by CRAG and led to the initiative set out in this Circular. The report of the Steering Group can be found on the CRAG web site. 5. In September 1998 Priorities and Planning Guidance for the NHS in Scotland 1999-2002 was issued under cover of MEL(1998)63. Paragraph 5.5 of the circular stated:
6. Further information about national initiatives in diabetes is included in an Annex below. Scottish Diabetes Survey 7. The rationale for seeking to undertake a regular survey of patients with diabetes is set out in Box 1.
8. It is the responsibility of Health Boards to ensure that they are in a position to assess if the standard of care provided to patients with diabetes within their Health Board area is satisfactory. Making a detailed assessment requires a register of diabetic patients. However, it is likely that the Health Board's role will be one of co-ordination and strategy and they will wish to subcontract the maintenance of the local diabetes register to an appropriate third party/parties (e.g. a Trust or other Health Board). Whatever the chosen mechanism, it is the responsibility of the Health Board to ensure that there is a register of patients with diabetes in their health board area and a named individual should be appointed at Health Board level to discharge this responsibility. 9. Patient confidentiality and data security are essential in collecting and transferring any clinical data. The Data Protection Act 1998 provides safeguards for the processing of personal data and Health Boards and Trusts will need to ensure that their procedures for capturing and sharing patient data comply with the provisions of the Act. As this survey constitutes the first such development since the Act, (and no clear standard has emerged), every precaution should be taken to remain within its terms. Therefore, Health Boards and Trusts are advised to make sure that each patient whose clinical details are included on a local diabetes register are aware of their inclusion in a national survey, and the implications of each of these actions prior to their inclusion in any (further) survey analysis. Patients should be informed about any personal data being collected, how the data might be used, that their consent will be sought if the data might be used for any other purpose, and that they have the opportunity to refuse or limit their consent to inclusion in the survey. Patients should also be reassured that their data is indeed held confidentially, that it is anonymised where it can be and that it is not used for people who were not originally intended to see it. To support this endeavour, Local Diabetes Service Advisory Groups should seek the advice of Caldicott Guardians in order to prepare standard written materials which inform patients, and brief clinical staff in the course of consultations they may undertake on the subject. They should ensure that appropriate procedures are in place, perhaps forming a local data ownership group with patient representation in order to secure this task. Health Boards are asked to advise the Health Department by 30 November 2000 of the arrangements in place to deal with this issue. More information about the Data Protection Act is provided in the recently issued MEL(2000)17 - "Data Protection Act 1998". 10. The main purpose of the Scottish Diabetes Survey is to evaluate the progress of Health Boards and Scotland as a whole towards meeting the St Vincent targets and patient specific data will not be used in analysing or reporting the data. However, identifiable data will be needed by ISD to compile the information (e.g. check for deaths, remove duplicate entries). Patient specific data items will not be available to anyone other than the staff within ISD concerned with checking and compiling the data. One role of the Scottish Diabetes Survey Monitoring Group (see below) will be to act as a 'data ownership group' to ensure that this process is managed in accordance with data confidentiality and security regulations. 11. ISD has been commissioned to pilot a database to collate, compile and report the survey. In order to test the system and allow all stakeholders to familiarise themselves with the survey, the first survey will be undertaken on 31 March 2001. Health Boards and Trusts are asked to work with ISD and to submit by 11 May 2001 as much of the SIGN dataset as is available for the patients with diabetes in their area. This provisional survey will enable the technology and the systems to be tested. This will provide valuable insights to allow refinements to be made in time for the first Scottish Diabetes Survey which will be based on data for all diabetic patients in Scotland as at 31 March 2002. 12. The central ISD database will have the capacity to collate the full SIGN dataset data for all patients with diabetes in Scotland. Health Boards with well developed data systems are encouraged to submit the full range of data items. However, the data items detailed in Box 2 below should be considered as the minimum which should be submitted for each patient. Responsibility for collecting and quality assuring the data rests with the Health Board (or their agents); ISD will undertake only basic data checking. All the requested data items are included in both the SIGN dataset and the SPICE-PC criteria for non-insulin dependent diabetes. 13. A key driver for the Scottish Diabetes Survey is the wish to support and encourage the establishment of effective local diabetes systems which work to improve patient care and assist service delivery. To this end, the national survey is envisaged as a collation of returns from local area registers. However, it is acknowledged that some Health Board areas have more developed systems than others. The expectation is that the survey will fill out over time, i.e. it may take a number of years before the survey is comprehensively populated.
14. In addition, a 'quick fix' to meet the new national demand for data as set out in this circular is neither appropriate nor intended. The extended lead in time is intended to assist those areas with less well developed IT systems, and/or those who have major IT procurement programmes already in place. The expectation being that those commissioning IT systems should ensure that that any new system is capable of capturing the SIGN dataset. All Health Boards will be expected to advise the Scottish Diabetes Survey Monitoring Group of their timetable to establish effective local mechanisms to capture the required data. 15. The requirement to create area-wide diabetes registers provides the opportunity to establish local recall systems to ensure that diabetic patients receive appropriate follow-up. Health Boards and Trusts are asked to consider how such a system might operate. Scottish Diabetes Survey Monitoring Group 16. A Scottish Diabetes Survey Monitoring Group will be established by the Health Department by October 2000 in order to supervise the development and evaluate the output of the national survey. The proposed remit of the Monitoring Group is set out in Box 3.
17. In essence, the Monitoring
Group will be expected to answer the following questions:-
Conclusion 18. The Scottish Diabetes Survey is intended to be evolutionary - IT developments may provide more effective solutions than an annual snapshot survey and service developments may demand other approaches. Evaluating the technology, methodology and the content of the survey will be a part of the Scottish Diabetes Survey Monitoring Group's remit. 19. The planned 'provisional survey' to be undertaken in March 2001 and the long lead time are intended to provide all Health Boards and Trusts with sufficient time to allow them to be able to fully contribute to the first Scottish Diabetes Survey in 2002. It is also intended to signal the recognition that the capture and collation of data is a complex issue which will require the input and collaboration of a wide range of people - a process in which the collation of data at national level is only one small part. However, the Scottish Diabetes Survey and in particular the activity at local level which must underpin it, represent an important opportunity to improve the standard of care available to people with diabetes. ANNEX Further Information about National Initiatives in Diabetes Working Group on IT to Support Shared Care in Diabetes A Working
Group, chaired by Edinburgh GP, Dr Ewan Crawford, set up by CRAG to explore
how shared care in diabetes might be supported by IT and to consider which
data need to be captured and shared to facilitate clinical care. The Group's
report will be published in 2000. Diabetes IT System Demonstrator Sites Arising
from the work of the Diabetes Registers and IT Systems Steering Group,
CRAG agreed to commission work in two or three Trusts to demonstrate how
IT can support clinicians and improve care to patients with diabetes.
After review, three sites were selected - Tayside, Grampian and Lanarkshire.
Work at the three sites began in March 1999. Primary Care The Clinical Effectiveness Programme Steering Group in Primary Care was established last year by CRAG. Part of their work programme has been to set up a Scottish Programme for Implementing Clinical Effectiveness in Primary Care (SPICE-PC) who have agreed six clinical and administrative priorities for implementing this year in primary care. One of these relates to non-insulin dependent diabetes for which a set of key reference criteria have been agreed; building on current SIGN guidelines; and compatible with the wider datasets developed by CRAG. The SPICE-PC programme is linked with GPASS developments on care management screens through the work of the Scottish Clinical Information Programme (SCIMP) who are developing the layout of the care management screens and relevant Read Codes for the agreed reference criteria. In addition to facilitating data extraction for collation analysis and feedback within the context of clinical peer review, it should also allow relevant data items to be incorporated into the Scottish Diabetes Survey. Further
information about GPASS: http://www.show.scot.nhs.uk/gpass. Clinical Guidelines SIGN are currently reviewing their diabetes guidelines with a view to republishing them as a single document in 2001. An open meeting to consider a draft of this document has been scheduled for 11 December 2000. Seven SIGN reports are currently available:
Further information about SIGN: http://www.show.scot.nhs.uk/sign. Research The Chief Scientist Office (CSO) is currently funding five projects connected with diabetes at a total cost of some £571,000.
Further information about CSO: http://www.show.scot.nhs.uk/cso |
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