Lessons from developing and running a clinical database for colorectal cancer

BACKGROUND: Recent policy developments in the UK require the routine monitoring of the performance of cancer services. Developing and using clinical databases is one approach to meet this objective, but to date their implementation has been challenging. OBJECTIVE: To describe the development of the Thames Cancer Registry clinical database for colorectal cancer, and to present the lessons learnt in the first five years since its establishment. METHODS: Planning of this clinical database began in 1998. Detailed variables for the data set were derived by analysis of national standards and guidelines. Structured pro formas were designed to abstract data from clinical notes. A pilot study over 12 months collected 400 cases from seven hospital trusts in one cancer network. Data collection over the wider North Thames area began in 1999. RESULTS: The number of new records entered each year into the database rose from 747 in 1999 to 1107 in 2002. By 2004, it held a total of 8500. However, participation and completeness of data collection varied between trusts. Currently only 18 of 26 trusts in the area submit data and only 12 have done so every year. Overall completeness for key demographic and treatment variables has been between 80 and 100% but less so for more detailed diagnostic and treatment variables (40-60%). Barriers to implementation in trusts could be grouped as organizational, professional and data-related. Organizational barriers have included changes in the cancer networks, variability in trust commitment to different data sets and lack of personnel to enter data consistently. Professional barriers have included competing priorities and varying commitments within the multidisciplinary clinical teams. Data-related barriers include the wide range of database formats that are used in trusts, and a tendency for data to be collected at the end of the year rather than continuously. CONCLUSIONS: Creating and maintaining a clinical database is a time-consuming and complex undertaking. Completeness of ascertainment and quality are major issues of concern. Key lessons from this project have been that the commitment of clinicians and the ability of trusts to provide consistent support for data collection are crucial.