Directory of clinical databases: improving and promoting their use

Abstract

Background: The controversy surrounding the actual and potential use of clinical databases partly reflects the huge variation in their content and quality. In addition, use of existing clinical databases is severely limited by a lack of knowledge of their availability. Objectives: To develop and test a standardised method for assessing the quality (completeness and accuracy) of clinical databases and to establish a web based directory of databases in the UK. Methods: An expert group was set up (1) to establish the criteria for inclusion of databases; (2) to develop a quality assessment instrument with high content validity, based on epidemiological theory; (3) to test empirically, modify, and retest the acceptability to database custodians, face validity and floor/ceiling effects; and (4) to design a website. Results: Criteria for inclusion of databases were the provision of individual level data; inclusion in the database defined by a common circumstance (e.g. condition, treatment), an administrative arrangement, or an adverse outcome; and inclusion of data from more than one provider. A quality assessment instrument consisting of 10 items (four on coverage, six on reliability and validity) was developed and shown to have good face and content validity, no floor/ceiling effects, and to be acceptable to database custodians. A website (www.docdat.org) was developed. Indications over the first 18 months (number of visitors to the site) are that it is increasingly popular. By November 2002 there were around 3500 hits a month. Conclusions: A website now exists where visitors can identify clinical databases in the UK that may be suitable to meet their aims. It is planned both to develop a local version for use within a hospital and to encourage similar national systems in other countries.

Cross sectional survey of multicentre clinical databases in the United Kingdom

“…In 2001 we created the Directory of Clinical Databases (www.docdat.org), which allows, for the first time, access to descriptions of the clinical databases that exist in the United Kingdom, including independent reports of their quality, and allows us to explore which organisational and managerial features of databases are associated with high quality and to make recommendations for improvements 10 11…”

The VASOGRADE

“…Therefore, we did not have control over how the variables were collected and recorded (eg, how the CT scans were analyzed and classified according to modified Fisher score), the patients included (inclusion and exclusion criteria defined by each specific trial), and the integrity of the data (Table II in the online-only Data Supplement). 38 Second, the secondary use of data from randomized clinical trials cares the limitation of results generalizability because randomized clinical trials usually enroll only a small fraction of screened patients. Additionally, the inclusion of a placebo group could add a confounding factor into the model, especially whether the intervention was positive.…”

Using Existing Data to Address Important Clinical Questions in Critical Care

“…This involves characterizing the quality and overall susceptibility to bias of the data source. While this process largely remains a subjective task(40, 41), in 2003 a group of investigators from the United Kingdom developed a framework to assess the quality of secondary databases(42). The framework included two aspects characterizing database quality: coverage and accuracy (Table 1).…”