National Health Data Collections

1. National Health Data Collections • – completeness, quality, timeliness, availability • Presentation to Massey University’s Centre for Public Health Research • Simon Ross • Information Group, National Health Board • 8 May 2012

2. Overview • What are the National Collections • Where National Collections sit in the current MoH structure • Purpose and characteristics • Types of collections – high level overview • Completeness, quality, timeliness and availability • Who to contact for data requests and queries about the data

3. What are the National Collections • A national repository of health information collected and maintained by the Ministry of Health • Split into ~ 14 individual collections • Held in the Ministry of Health’s data warehouse and accessible to some users directly and to a much wider group by request • Often the initial rationale for a collection was for a payment, funding or monitoring purpose, but the information collected serves many purposes including research • Information can be linked to the same patient across collections • Not included – Health Survey data

4. Structural change – from NZHIS to NCR • New Zealand Health Information Service (NZHIS) • disestablished 2008 • National Collections and Reporting (NCR) • Part of the Information Group in the National Health Board (NHB) Public Health Intelligence (PHI) Health and Disability Intelligence (HDI)

5. National Collections & Reporting (NCR) • Group Manager – Tracey Vandenberg • 5 Teams: • Data Management, National Collections • Classification & Terminology • Analytical Services • Statistics & Reporting • Projects

6. The 6 uses of data principle • Collect once, use many times: • Supporting self-management • Supporting clinical intervention • Clinical governance • Administration (in all parts of health) • Strategy and policy development • Research

7. National Collections - characteristics • Person-centred – NHIs on all records • Multiple uses – (‘collect once, use many times’) • A mix of information available • Administrative • Demographic • Geographical • Clinical • Financial

8. National Collections – here they are: • DHB Collections • National Minimum Dataset (NMDS) • National Booking Reporting System (NBRS) • National Non-Admitted Patient Collection (NNPAC) • PRIMHD – mental health data • Registries • New Zealand Cancer Registry (NZCR) • National Immunisation Register • Mortality Collection • Primary Care Collections • Laboratory Claims Collection • Pharmaceutical Collection • General Medical Subsidy Collection • Primary Health Organisation Enrolment Collection • Other • National Maternity Collection • Medical Warning System • National Health Index • Health Practitioners Index

9. National Minimum Dataset (NMDS) • Hospital discharge event data from all DHBs (~1,000,000 events per annum) • Hospital events from many private hospitals (130,00 events per annum) • Clinical coding applied to all events (ICD-10-AM) • Coded diagnosis, procedure and external cause detail • Up to 99 codes able to be reported per event • Coded data augmented with free text in some cases • Year ends 30 June

10. Private Hospitals data • Discharge event data from >300 private hospitals/facilities • Reporting not mandatory (except publicly funded events) • data are incomplete • some large surgical hospitals don’t report • Quality of diagnosis information report often poor – procedures information is better • Data loaded into NMDS • Availability • Affected by completeness • published along with public hospital NMDS data

11. Mortality Collection – information sources • Data from 1988 (but statistics from earlier years are available) • BDM Death and Stillbirth registrations – core datasets • Causes of death information • Medical certificates of cause of death • Coroners reports • Postmortem reports • Hospital events in NMDS • New Zealand Cancer Registry (NZCR) • Land Transport NZ, Water Safety NZ

12. Mortality Collection – continued • Underlying cause of death – on all records • Specific contributing causes: • Diseases including diabetes mellitus, alcoholism, HIV & others • Injuries (from 1999 onwards) • All causes for 0-24 years (from 2010) Dynamic database • Each year’s data is published once a determination is made that most salient data has been received • Updates are applied if subsequent relevant information is received • Coroner’s decisions are the primary reason for updates

13. New Zealand Cancer Registry (NZCR) • Data from 1948, Cancer Registry Act 1993 & Regulations 1994 • All new cancers diagnosed in NZ • Information sources: • Pathology & haematology reports from Labs • Other National Collections (NMDS / Mortality Collection) • ICD-10-AM cancer ‘site’ codes, ICD-O morphology • Timeliness: • Specialist ‘sites’ – coded within 3 months of notification (respiratory, breast, melanoma, prostate, cervix, colorectal, haematology/lymphatic, 0-24 yrs) • General release ~18 months after year of reference

14. Collection – who provides the data? • Local • GPs, pharmacies, laboratories, NGOs, LMCs, private hospitals • Regional • DHBs, PHOs • National (government agencies) • Department of Internal Affairs, Coronial Services

15. Examples • NMDS • DHBs, private hospitals • PRIMHD • DHB secondary mental health services, NGOs • Maternity • LMC claims, NMDS • mother-baby links from up to three sources (hospitals, claims, registrations) • Mortality • Registrations – Department of Internal Affairs • Cause of death – coroners, death certificates, post mortem reports, NMDS, NZCR, more

16. What do the collections contain? • A patient identifier (NHI numbers) • Demographics • Geographic locators (meshblocks, domicile codes, TLA, DHB) • Dates of service • Clinical information (varying levels of clinically relevant data) • Administrative data • Financial data (varying levels and sources)

17. Contents discussion (examples) • Varying levels of clinical information • NMDS vs NNPAC • Pharms: medications but not conditions • Labs: tests but not test results • PRIMHD: services provided / team information but limited diagnosis and outcomes information at this point • Varying levels and sources of financial information • NMDS vs NNPAC • Pharms vs Labs (estimates) • PHO (capitation), GMS (fee for service)

18. Completeness • Variable and collection specific • Completeness does affect our release policy for certain collections • For example: • NMDS (public vs private) • Pharms (community dispensed and subsidised vs hospital) • Maternity (LMC claims data vs DHB provided services) • NHI reporting to labs and pharms – improvements over time

19. Completeness – example NHI reporting (pharms) NHI reporting (labs)

20. Quality - general • Quality and completeness are closely related • Quality can vary based on many factors, for example: • The source of the data • The maturity of the collection • The method and location of data collection, coding and entry • This is not a exhaustive list

21. A selection of quality-related concepts • Compliance • Business rules • Opportunities for re-submission • Master NHIs: merge, unmerge, overlays • Geocoding • Applying aggregate measures to individuals: NZDep • Challenges of using claims data – the impact of purpose of collection on the quality of information submitted • The effect of incentives on patterns of coding and data submission • Examples: NMDS coding (public vs. private), maternity data quality

22. Timeliness • Submission times • DHB collections – monthly • Claims collections – ad hoc (but with limits) • Mortality – dependent on the data source • Cancer – dependent on the source of diagnosis and the data element

23. Availability • Controlled release collections • Mortality and cancer • Provisional data • Identifiable > encrypted > non-identifiable > aggregate • Who to contact? • data-enquiries@moh.govt.nz • Team Leader, Analytical Services, 04 816 2893