Data collected includes surgical processes and clinical outcomes in the area of cardiac surgery and used for clinical quality improvement. The Registry is available to all cardiac surgeons and authorised health care professionals practising in the five public and six private cardiac surgery centres in New Zealand. Data input to the Registry will be conducted by a combination of direct user input and auto filling from national patient and healthcare provider identity systems and repositories of core health information and District Health Board (DHB) regional or local patient administration systems (hospital admission and outpatient booking details)

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 - via NHI
Volume of data (e.g. how many records) Since when? None - project in progress
Purpose and governance including ethics committee/patient consent mechanisms. Q: How do you get around ethics/privacy issues with your data sources? Esp. DHBs? Governance will be provided, and rules set, by the NZ regional committee of the Cardiac Society of Australia and New Zealand, acting through its appointed representatives – the Cardiac Registry Governance Group. Ethics and consent mechanisms not specified.
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? Yes - Data will be collected in approximately 330 separate fields recording information in the broad headings of surgical preparation, procedures and outcomes, and medications. These will be broken down into these twelve specific areas: 1. Patient demographics 2. Patient risk factors 3. Pre-operative cardiac status 4. Previous interventions 5. Haemodynamic data 6. Operative status/category 7. Minimally invasive treatment 8. Cardiopulmonary bypass and support 9. Coronary bypass surgery 10. Valve surgery 11. Post-operative data 12. Mortality / readmission
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.)
Linked (or linkable) to other datasets within your organisation or across the Sector Yes - potentially to other NHI based datasets in NZ. Also tothe Australian ASCTS database
How often does this data set get updated? Daily? Weekly? Monthly? Quarterly? Yearly? realtime - but data are collected per patient at the time od admission and then 30days and 12 months after discharge
Indication of data quality (e.g. missing values, duplications, inconsistencies etc.). Q: Audits? How do you ensure the data is valid and correct? TBD
Brief info about the systems and processes used to collect/manage data. Q: Where the data is collected, in what form, and accessibility? a secure web based database will be developed integrated with NHI system and clinical systems such as Concerto.
Data format, e.g., data structure, data types, and storage form (relational database, Excel, csv, etc.). TBD
How well the data is structured, e.g. free text VS coded text VS pick-list (drop-down list) Well structured