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 1

2. Overview 1.What are the National Collections 2.Where National Collections sit in the current MoH structure 3.Purpose and characteristics 4.Types of collections – high level overview 5.Completeness, quality, timeliness and availability 6.Who to contact for data requests and queries about the data 2

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 3

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) 4 Public Health Intelligence (PHI) Health and Disability Intelligence (HDI)

5. National Collections & Reporting (NCR) Group Manager – Tracey Vandenberg 5 Teams: 1.Data Management, National Collections 2.Classification & Terminology 3.Analytical Services 4.Statistics & Reporting 5.Projects 5

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 6

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 7

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 8

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 9

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 10

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 11

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 12

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 13

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 14

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 15

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) 16

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) 17

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 18

19. Completeness – example NHI reporting (pharms) Claim yearYear HCU % 2001 0.0% 2002 25.6% 2003 43.7% 2004 63.9% 2005 86.5% 2006 92.2% 2007 94.3% 2008 95.4% 2009 95.8% NHI reporting (labs) Claim yearYear HCU % 2001 66.7% 2002 73.5% 2003 82.0% 2004 87.9% 2005 90.9% 2006 92.1% 2007 93.9% 2008 95.5% 2009 96.8% 19

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 20

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 21

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 22

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 23