CCDHB - Clinical database for daily use in clinical setting. Data collected is demographic as well as clinical and is also used for clinic bookings/schedules. Laboratory results can also be accessed. Finally the databsed specifically links family members together under a unifying Family Number. ADHB - Currently replacing old Access database with new design which will be similar to CCDHB.

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.)? YES, all individuals identified by NHI as well as demographic data. All linked under family number
Volume of data (e.g. how many records) Since when? Clinical and laboratory files now number many tens of thousands. 17.5 GB data file and 7.7 GB log file
Purpose and governance including ethics committee/patient consent mechanisms. Q: How do you get around ethics/privacy issues with your data sources? Esp. DHBs? Clinical utility. Patient consent included in initial consultation.
Scope National
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? Dx & Outcome: Yes, clinical data can be included, main limitation is staff time to enter data. Procedures, etc: All relevant genetic data is included, which may include genetic testing results and interventions. Cost/price: No.
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.) No information from vendor
Linked (or linkable) to other datasets within your organisation or across the Sector Yes, data imported from CCDHB Concerto and CDHB Health Connect South
How often does this data set get updated? Daily? Weekly? Monthly? Quarterly? Yearly? Constant, depending on when file is accessed.
Indication of data quality (e.g. missing values, duplications, inconsistencies etc.). Q: Audits? How do you ensure the data is valid and correct? Good.
Brief info about the systems and processes used to collect/manage data. Q: Where the data is collected, in what form, and accessibility? Data entered at various times during "patient journey" including referral data, appointment data, clinical data, genetic testing data and family pedigree data.
Data format, e.g., data structure, data types, and storage form (relational database, Excel, csv, etc.). Relational database
How well the data is structured, e.g. free text VS coded text VS pick-list (drop-down list) Drop down lists in compulsory fields, some free text fields, also hyperlinks, tabs etc
How quickly can the data be made available from time of request and how old is the data once it is made available NO access to the data from outside the service (no external exports or access from non-service straff.)