REVIEW ARTICLE

The use of computers in primary diabetes care

C Kenny

Key words diabetes mellitus; diabetes registers; primary diabetes care; secondary diabetes care; St Vincent Declaration; information technology; computers

Correspondence to: Dr Colin Kenny MBFRCGP, GeneralPractitioner, Dromore Doctors Surgery, Dromore, County Down, Northern Ireland BT25 lBD, UK

Accepted for publication: 7 January 1997

Introduction The management of patients with diabetes, in primary care, has been developing steadily over the past two decades in the United Kingdom. Various models for general prac- titioner care, such as dedicated mini-clinics1 and shared care2.3 have been proposed, and critically examined4. There is a growing role for the diabetes specialist nurse in the com- munity5.

Primary diabetes care was given fresh impetus by the General Practice Contract of 19906 and it was further refined by the Health Promotion Package in 19937, which introduced Chronic Disease Management (CDM) of Diabetes. Allowing for regional variations, approximately 80% of UK prac- tices have agreed to provide this programme of care. Participants in CDM have a res- ponsibility to monitor the care of all their patients with diabetes, and audit outcomes.

General practice computer systems Paralleling these developments in diabetes care, general practices have been increas- ingly using computers in patient manage- ment. By the mid 1980s much more satis- factory systems had been developed, Around the period of the 1990 contract, government reimbursements encouraged general prac- tice use of computers to rise from 20% in 1988 to 70% in 19928. This trend continued, and it has been estimated that, by the end of 1997, 92% of practices will be compu- terisedg.

In the majority of practices, primary care workers key in information, although nearly all practices retain manual records. Specific record transfer to computer is facilitated by ancillary staff, and computer use in the con- sultation is increasing. ‘Read codes’ have helped standardisation 10.

In response to these developments several computer suppliers have become prominent in the marketplace. Most of the large com- mercial systems are ‘closed’ systems: the practice buys the computer hardware and software, as a package; these systems retain

their own operating mechanisms, and do not easily allow information to be imported or exported from them, apart from practice reports. This prevents external software from contaminating them, and means that there are no compatibility problems within an individual practice. It is hoped that this situation will be modified, when third gen- eration systems become available. It is anticipated that these systems will work in a ‘windows’ environment, in which files can be accessed quickly and clearly, and several files worked on at once.

Well structured patient records, accurate disease registers and summary records are all facilitated by computerisation 1. The relia- bility and validity of data is perhaps the main area where standards can be improved.

When considering diabetes care within individual practices, computers can facilitate the formation of a practice diabetes disease register, help with record accuracy, and enhance prescribing information and sum- maries of the condition. The computer can also track patients who are due for review or have defaulted from follow up or repeat medication. Unlike the other condition cov- ered by CDM, asthma, there is a wide range of relevant data items which may be re- corded. This computer activity which has been

going on throughout the UK, means that general practitioners hold a large data set of patients with diabetes. It could be estimated that between 80% and 90% of people with diabetes have data collected on them in general practice computers. This data is neither standard nor uniform. A frequent criticism of the Health Promotion activity has been that large amounts of data have been recorded, without this being used to improve patient care. Such information could be used for more practice and district audit in dia- betesl2.

Hospital computer systems Paralleling these primary care developments has been the growth of hospital diabetes systems. Hospital systems have different

needs from those of primary care. Several commercial database packages are available, others have been produced within the information technology departments of the hospitals or trusts themselves, to serve a specific function. It is unusual for the hospital doctor to record data directly or to use this as a medical record. These systems seldom link either with other hospital sys- tems or with the general practitioner, unless by generating a paper record.

The British Diabetic Association, in col- laboration with the Royal College of Phy- sicians, has suggested aminimum data set for monitoring diabetes care’s. This has been modified, allowing three levels of data entry’‘‘. This data set has been used as a basis for the software system DIALOGl5. It is hoped that this will help create District Diabetes Registers and prompt the process of diabetes annual review across both primary and secondary care.

Diabetes data retrieval projects In 1989 the St Vincent Declarationl6 set goals for diabetes care as well as for en- couraging better co-operation between health- care workers. The importance of information technology was emphasised, and this has given rise to the DIABCARE working groups which, in turn, encouraged the DIAB- CARE quality network projects. These ven- tures are ongoing at pilot stages throughout Europe, many of them led from secondary care. A European diabetes data set has been suggested.

With the United Kingdom DIABCARE projects, the large quantity of diabetes data held in primary care here is recognised. It is hoped that existing diabetes records on general practice computers will be aggre- gated, allowing care to be regularly and systematically assessed. The co-operation of commercial computer suppliers is being sought.

Several models for district diabetes projects already exist. The first successful scheme, which was both paper- and com-

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Practical Diabetes International August 1997 Vol. 14 No. 5

REVIEW ARTICLE The use of computers in primary diabetes care

Key points 0 General practice use of computers rose from 20% in 1988 to 70% in 1992

and is estimated to reach 92% by the end of 1997. GPs now hold large data sets ofpatients with diabetes

0 The BDA, with the Royal College of Physicians, suggested a minimum data set for monitoring diabetes care, and this formed a basis for the software system DIALOG It is hoped to create District Diabetes Registers which willprompt annual diabetes review across primary and secondary care

puter-based, was in Salford17. A successful computer-based register was described in Derbyle. Projects are ongoing in Brighton using DIALOG19, in Heme1 Hempstead using the EMIS system20, and in North Lincolnshire21. In these projects general practice records and hospital records are being anonymised and assimilated.

Apart from these developments, many practices also have stand alone computer systems. To take advantage of this, a variety of computer software has been developed to do specific diabetes tasks. These software packages either help with the medical records or audit tasks (such as DiabSys22) or facilitate decision support, for example in glucose monitoring. There is large potential for educational software systems. Infor- mation technology, is changing rapidly, and the growth of the internet has the potential to disseminate knowledge widely, both to healthcare professionals and to people with diabetes themselves. Compuserve already has a diabetes forum.

The challenge of forming diabetes registers With all these developments and projects, should we consider forming a national dia- betes register, as is being planned in other European countries?. In the United Kingdom we are unique in having a large amount of diabetes. patient data already on computer. Good quality data is held both in primary care and secondary care. Why then can we not form a national diabetes register as suggested in the St Vincent Declaration? Having formed this register why can we also not collect significant data on the important criteria suggested by the declaration ?If there is a flaw in the Declaration it is that, in order to show change, it is vital to know current standards at both regional and national

levels. The Declaration pointed to information

technology as holding the key to the prob- lem, yet a number of factors are holding this development back. Confidentiality is the single most important consideration. Anec- dotal evidence suggests that patients would support such a register. Data protection however is very strict and, with EC regulations, getting stricter. Although this is vital, it is potentially stifling, as any data collected has to be anonymised to a very high standard.

Can the task actually be done? Initial pilot studies have been encouraging, but they need to be validated. Unfortunately there is not a history of primary and secondary care co- operation.

Technology has advanced in the area of electronic data interchange, but a way of securely extracting data, and accurately transferring it confidentially, has not been perfected. General practitioners do not want to have to do double entry of data into different systems.

Finally the task of both creating and main- taining these registers is immense. Such a register would not be static, and would need regular maintenance. At present there is neither the political nor the financial will to support this potentially enormous task.

The decade 1986-1 996 saw considerable advances in the collection and use of diabetes patient data in both primary and secondary care. If this momentum continues and tech- nology continues to advance, then the sig- nificant hurdle of confidentiality must be addressed. If patients, primary care workers and those in secondary care co-operate, then a national diabetes register, along with dependable data on individual patients, is an achievable goal forthe early years of the next century.

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