title: District diabetes registers: more trouble than they're worth?
abstract: Many areas in the UK are developing district-based diabetic registers with the anticipation that this will facilitate the call and recall of patients for regular reviews and thereby improve their quality of care, as well as provide data for many other uses, such as local healthcare planning and epidemiological research. But there are a clutch of unanswered questions which need attention. The ethical issues surrounding the consent and confidentiality of data on individuals are not resolved. There are practical problems which impede the collection and maintenance of complex data sets, especially if they are to include biomedical fields, and as yet no cost-effectiveness research which informs this debate. The argument that district registers may be the best way to demonstrate comprehensive diabetes services must not override two important concerns: firstly, where should the responsibility lie for monitoring silently damaging chronic illnesses--with patients, practices or districts, or all three? Secondly, if district level registers do become the accepted tools, let us not ignore the missing data field--that the quality of diabetic care is dependent more on the patient-doctor relationship than we want to acknowledge, or measure, however efficient our system. We conclude by observing that rudimentary registers are arriving in many areas, but the question remains--will diabetes registers aid the delivery of a high quality service for diabetes across the primary/secondary care interface? Truthfully, it is just too early to tell, and perhaps too late to ask?
authors.affiliation: School of Postgraduate Medical Studies and Department of General Practice, University of Wales College of Medicine, Health Park, Cardiff, UK. Elwyng@cf.ac.uk
authors.forename: G J
authors.initials: GJ
authors.lastname: Elwyn
authors.forename: N J
authors.initials: NJ
authors.lastname: Vaughan
authors.forename: N C
authors.initials: NC
authors.lastname: Stott
mesh_terms: D003219:Confidentiality; D003362:Cost-Benefit Analysis; D003920:Diabetes Mellitus; D004989:Ethics; D006801:Humans; D007258:Informed Consent; D012042:Registries; D006113:United Kingdom