Description:

To provide quality surveillance for about 50 diseases for which reporting by medical practitioners is mandatory. Notifiable disease information is entered on an ESR-developed web-based application at the Public Health Services in New Zealand and analysed at ESR. Surveillance data is disseminated through a variety of outputs, of which many are accessible through Surveillance Reports. The data in these reports contributes to development of policy and intervention initiatives at the national level, as well as providing local authorities with timely and accurate information about diseases of national importance.

Additional information:

Have_(encrypted)_NHI No
Personally identifiable (e.g. linked to NHI numbers) and longitudinal or aggregated (e.g. for planning, clinical research etc.)? NHI not mandatory - Surname, name and DoB
Volume of data (e.g. how many records) Since when? 19,000 CRF
Purpose and governance including ethics committee/patient consent mechanisms. Q: How do you get around ethics/privacy issues with your data sources? Esp. DHBs? collect on behalf of MoH - just custodians. No link to other stakeholders or consumer groups. Data access: happens through DAP - ESR manages external data requests but MoH approves. Internal access list is applied
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? To varying degrees: key data fields collected include case demographics, clinical features and risk factors.
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.) Case Report Forms (CRF) available which define collected data. Data are stored in RDBM
Linked (or linkable) to other datasets within your organisation or across the Sector No linkages external - with some own ESR Labs for certain lab tests.
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? reasonably good. There are built-in data quality queries, reports for public health offices. Completeness is an issue, actively managed and reported.
Brief info about the systems and processes used to collect/manage data. Q: Where the data is collected, in what form, and accessibility? A custom developed secure web based software is used (EpiSurv) and made available to public health units. In large units surveillance officers enter/updating info amd in smaller ones admin, health protection officers. Each provider can see their data and summary of others GIS component present - possible to generate regional views etc. full audit history on database
Data format, e.g., data structure, data types, and storage form (relational database, Excel, csv, etc.). Defined in CRFs CRF are stored: 1)CRFs as XML, 2) entire Hx of changes and latest version of CRF in RDBMS
How well the data is structured, e.g. free text VS coded text VS pick-list (drop-down list) good level of structuring - few free text. Substantial use of local codes as well as standards like ethinicity, occupation etc. from NZ stats lists