Description:

collection of information regarding diabetes and pre diabetes to help the GP improve care provided to patients with diabetes/non-identifable use for quality improvement and approved research

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.)? Personally identifiable as well as unique identifier
Volume of data (e.g. how many records) Since when? in excess of 80,000 records in the existing database going back to 2005. Previous data back to 1994 approx, at least another 60,000 records. Havent done the calculation of how many individual patients there are but they do have unique identifiers, suspect over 40,000 over the entire timeframe.
Purpose and governance including ethics committee/patient consent mechanisms. Q: How do you get around ethics/privacy issues with your data sources? Esp. DHBs? DCSS executive approval, agreement for use. Privacy/ethics - can discuss.
Scope Cohort
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 - diagnosis/outcomes, yes - procedures/medication. No - price data
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.) Access front end, microsoft server of some sort underneath (would have to check), files can be downloaded in excel format.
Linked (or linkable) to other datasets within your organisation or across the Sector no. Has been used by CMDHB when they did a stocktake of diabetes a few years ago
How often does this data set get updated? Daily? Weekly? Monthly? Quarterly? Yearly? information added continually as it comes in from auditors
Indication of data quality (e.g. missing values, duplications, inconsistencies etc.). Q: Audits? How do you ensure the data is valid and correct? data collection - meetings/cross auditing for auditors, cross checking by different staff of data, data entry checking, database filtering.
Brief info about the systems and processes used to collect/manage data. Q: Where the data is collected, in what form, and accessibility? collection direct from clinics using queries/coding/existing DCSS registers covering 12 month period of care, manual entering of data into stand-alone databse, analysis/reporting/personal feedback
How well the data is structured, e.g. free text VS coded text VS pick-list (drop-down list) variety.