Description:

To identify the current pathway for patients with bowel cancer in the South Island and identify issues, service gaps, bottlenecks as well as exemplary practice along the pathway

Additional information:

Have_(encrypted)_NHI Yes
Personally identifiable (e.g. linked to NHI numbers) and longitudinal or aggregated (e.g. for planning, clinical research etc.)? NHI
Volume of data (e.g. how many records) Since when? Incomplete data for 27 patients resulted in the final audit figure of 237 sets of notes, based on a random sample of 264 patients out of Newly diagnosed cancer of the colon or rectum registered between 1 January 2008 and 31 December 2009.
Purpose and governance including ethics committee/patient consent mechanisms. Q: How do you get around ethics/privacy issues with your data sources? Esp. DHBs? Ethical approval for the project was granted by the Multi-Region Ethics Committee, MEC/09/72/EXP.
Scope Regional
Does the data contain diagnoses and clinical outcomes? Does the data contain procedures, device information and medication for therapy? Does this data set have cost / price data? Yes - Dx
Presence of Data dictionary? Column headings in Excel or any kind of data model if residing in a relational database (e.g. Access, SQL Server, Oracle etc.) NHI, gender, DoB, DHB of domicile, Eth, postcode, Date of death, smoking status, family history of bowel cancer, referral dates, FSA dates and treatment dates, etc.
Brief info about the systems and processes used to collect/manage data. Q: Where the data is collected, in what form, and accessibility? Data were extracted from hospital notes using the audit form designed to capture a synopsis of each patient’s experience. Sixty data points including referral dates, FSA dates and treatment dates were sourced from patient files, with missing data followed up via the DHBs’ electronic patient management systems.