title: Clinical databases and data protection: are they compatible?
abstract: In the current climate of clinical governance and audit, and in the setting of an active academic unit, an effective clinical database is an invaluable tool. In this article, we will present our neurovascular database, discuss the issues related to setting up the ideal clinical database, discuss the problems related to accurate data input and review the legal requirements of data protection. The success of a clinical database is reflected by the completeness of the data, the accessibility of the information and how useful it has proven to be. After 4 years of experimentation we currently use a database designed on Microsoft Access. The form is a single page. Junior medical staff input the information as medical staff have been found to be the most reliable personnel for data input in terms of accuracy. However, time is generally in short supply amongst this group. For our purposes, the ideal database is one that is simple, that can be used to flag up cases, rather than provide all of the information and ensures a complete dataset. The arrival of the UK 1998 Data Protection Act has put many clinical databases and registries in jeopardy, and introduced further bureaucracy to research. We discuss the Act and its interpretation by the General Medical Council, Medical Research Council, British Medical Association, Department of Health and our own trust with respect to databases and research.
authors.affiliation: Victor Horsley Department of Neurosurgery, National Hospital for Neurology and Neurosurgery, Queen Square, London, UK.
authors.forename: C E
authors.initials: CE
authors.lastname: Gilkes
authors.forename: M
authors.initials: M
authors.lastname: Casimiro
authors.forename: A W
authors.initials: AW
authors.lastname: McEvoy
authors.forename: R
authors.initials: R
authors.lastname: MacFarlane
authors.forename: N D
authors.initials: ND
authors.lastname: Kitchen
mesh_terms: D002561:Cerebrovascular Disorders / Q000628:therapy*; D016494:Computer Security / Q000331:legislation & jurisprudence* / Q000592:standards; D003219:Confidentiality; D016208:Databases, Factual / Q000331:legislation & jurisprudence* / Q000592:standards; D006761:Hospitals; D006801:Humans; D008485:Medical Audit; D012106:Research; D013222:State Medicine; D006113:United Kingdom