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

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Overview1. 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

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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

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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)

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

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

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The 6 uses of data principleCollect once, use many times:

• Supporting self-management

• Supporting clinical intervention

• Clinical governance

• Administration (in all parts of health)

• Strategy and policy development

• Research

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National Collections - characteristicsPerson-centred – NHIs on all records

Multiple uses – (‘collect once, use many times’)

A mix of information available

• Administrative

• Demographic

• Geographical

• Clinical

• Financial

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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

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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

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Private Hospitals dataDischarge 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

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Mortality Collection – information sourcesData 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

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Mortality Collection – continuedUnderlying 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

updates12

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

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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

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ExamplesNMDS

• 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

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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)

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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)

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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

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Completeness – example

NHI reporting (pharms)Claim year Year 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 year Year 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%

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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

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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

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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

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AvailabilityControlled 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

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