New Zealand Acute Coronary Syndrome Quality Improvement and Interventional Cardiology Registry (ANZACS QI) collects data via a secure web-based software for improving the quality of care and covers investigation with cardiac catheterisation (Cath) followed by treatment with either percutaneous coronary intervention (PCI) or coronary artery bypass grafting (CABG). The collected rich clinical data is then de-identified and linked to national collections, pharmacy dispensing and laboratory datasets and analysed.

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 based - but these are encrypted in the final deidentified dataset (eNHI)
Volume of data (e.g. how many records) Since when? 5-10k now but growing 25k annually
Purpose and governance including ethics committee/patient consent mechanisms. Q: How do you get around ethics/privacy issues with your data sources? Esp. DHBs? The multiregional ethic committee approval for the VIEW Programme covers ANZACS-QI Registry where individual patient consent is not required. However DHBs may require own privacy assessments. Opt-out is possible for patients
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? Data contains snapshots from patient encounters related with ACS and includes diagnoses, procedures, medications, lab results, vital signs, allergies, detailed demographics with geocoding as well as clinical assessments. Does not include cost directly but can be calculated by further linkages.
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.) Written data dictionary and data model available
Linked (or linkable) to other datasets within your organisation or across the Sector Yes through encrypted NHI
How often does this data set get updated? Daily? Weekly? Monthly? Quarterly? Yearly? real-time
Indication of data quality (e.g. missing values, duplications, inconsistencies etc.). Q: Audits? How do you ensure the data is valid and correct? ANZACS-QI builds upon the successful PREDICT work and uses the same software platform and analytics backend so the data quality is expected to be good. There is extensive automated validation on the forms at the time of data entry and also the data then undergoes a rigorous examination and cleaning. 2% of records will be audited annually.
Brief info about the systems and processes used to collect/manage data. Q: Where the data is collected, in what form, and accessibility? Data collection software (ANZACS-QI Software) is provided by Enigma Ltd. and developed on the Acute PREDICT Platform. The application is available through the secure Connected Health Network at healthcare providers via a browser. Data is hosted on a private data centre and snapshots are provided to NIHI for further processing and analysis. Access to data is strictly controlled but through formal data access requests if the requests are genuine and compliant with the Ethics and Privacy Framework of the Registry data extracts are provided.
Data format, e.g., data structure, data types, and storage form (relational database, Excel, csv, etc.). Collected data in a relational database (MS SQL Server) but cleaned and linked data in various formats including relational (Oracle), flat files (txt, csv etc.), XML and openEHR compliant
How well the data is structured, e.g. free text VS coded text VS pick-list (drop-down list) Extensive use of structured and coded data. Some items of interest are linked to multiple biomedical terminologies (e.g. ICD, READ, SNOMED, LOINC etc.)