Cancer related data and reports directory

This page is a directory of cancer reports and data to support the sector. It includes:

  • publicly reported national and international data relating to cancer
  • information on how to access the data directly from organisations
  • related information standards to help the sector develop their data.

While every effort has been made to keep this page current, please send updates or suggestions for new links to be included, to [email protected].

For a general directory for data sources commonly used when analysing the health of New Zealand populations see Where can i find health information?


Prevention

Health Promotion Agency – smoking rates

ASH – Year 10 smoking rates

ASPIRE2025 – a partnership between major New Zealand research groups carrying out research to help achieve the Government's goal of a tobacco-free Aotearoa by 2025.

NZ Health Survey – tobacco, alcohol, nutrition

Cancer Society Social and Behavioural Research Unit, University of Otago

Screening / Early Detection

BreastScreen Aotearoa

A range of reports using data from the breast screening programme across NZ, including:

National Cervical Screening Programme

A range of reports using data from the cervical screening programme across NZ, including:

National Bowel Screening Programme

The National Bowel Screening Programme – currently being rolled out national and reports will be provided on this website as they come available.

The Bowel Screening Pilot report – the Waitemata District Health Board area pilot that ran until December 2017.

Diagnosis and Treatment

Ministry of Health

Faster Cancer Treatment – quarterly reports on the timeliness of patients transitioning cancer services, along with reports on other national health targets.

Bowel Cancer Quality Improvement Report 2019 – the report measures the quality of care and outcomes for people diagnosed and treated for bowel cancer in New Zealand.

HQSC Atlas of Healthcare Variation

Lung (data 2008-2012) – an overview of the diagnosis and treatment of lung cancer in New Zealand, by district health board (DHB) and regional cancer network (RCN).

Bowel (data 2009-2013) – presents access, quality and outcome indicators across district health boards and Regional Cancer Network regions for people diagnosed with bowel cancer (adenocarcinoma of the colon or rectum).

The New Zealand PIPER Project – colorectal cancer survival according to rurality, ethnicity and socioeconomic deprivation—results from a retrospective cohort study.   

Supportive care

Social and Behavioural Research Unit, Otago University – access a range of reports including Psycho-Social-Spiritual Cancer Research.

Māori health

Ministry of Health

Māori health data and stats – statistical publications and data sets on Māori health.

Unequal Impact II: Māori and Non-Māori Cancer Statistics by Deprivation and Rural-Urban Status 2002-2006

Te Rōpū Rangahau Hauora a Eru Pōmare, University of Otago

Te Rōpū Rangahau Hauora a Eru Pōmare strives to create a Kaupapa Māori space committed to improving Māori health outcomes and eliminating inequalities through quality science and ongoing theoretical development. It takes a rights-based approach consistent with the Treaty of Waitangi, and is engaged with community through a spectrum of influence from community development, policy advocacy, research dissemination and Māori health research workforce development. Research areas include:

  • BreastScreen Aotearoa Māori Monitoring
  • District Health Board Māori Health Profiles 2015
  • Educating for Equity (E4E)
  • Ethnicity data
  • Hauora: Māori Standards of Health IV: A study of the years 2000-2005
  • Racism as a determinant of health
  • Rural Māori Health
  • The impact of racism on the future health of adults a prospective cohort study
  • Unequal Impact: Māori and non-Māori cancer statistics
  • Unequal Treatment - the role of health services.

Equity

Health Quality Safety Commission (HQSC) Atlas – Equity Explorer (data - provides information on how health and health care varies between groups of people, and between district health board (DHB) areas of Aotearoa New Zealand (NZ).

Cancer Trends – new information on trends and inequalities in cancer survival for 21 cancers diagnosed in New Zealand over a 13 year period, from 1991 to 2004.

Palliative care

Palliative Care Council, Ministry of Health – National Health Needs Assessment for Palliative Care provides data on the number of people who might benefit from palliative care in New Zealand, on both a national and regional basis. 

Patient Experience

Health Quality Safety Commission (HQSC)

Patient Experience Surveys – a set of measures used to understand patients’ views of the care they receive, and to make health care more responsive to their needs. The information gathered at local, regional and national levels through these measures can be used to benchmark patient experience across the country and to improve services locally.

NZ Research Partnerships

There are a number of research partnerships involving universities and clinicians undertaking cancer related research across NZ, including bio-medical, economic, translational and behavioural research.

The Health Research Council (HRC) – a useful source of information about studies currently underway.

Information on research groups and study areas are noted below:

Cancer and Chronic Conditions (C3) research group – the Cancer and Chronic Conditions (C3) research group is a collaborative group of researchers working at the interface between public health, health services research, and clinical medicine. Research includes:

  • Improving care and outcomes for Māori in New Zealand
  • Cancer and comorbidity; cancer in ageing populations
  • Cancer among Indigenous peoples globally
  • Mental health, cancer and chronic conditions
  • Stomach cancer: prevention and care
  • Testicular cancer
  • Diabetes: improving outcomes
  • Multimorbidity
  • Rheumatic heart disease
  • Cancer Control in the Pacific.

Burden of Disease Epidemiology, Equity and Cost-Effectiveness Programme (BODE³), University of Otago – The Burden of Disease Epidemiology, Equity and Cost-Effectiveness Programme (BODE³) has an aim to estimate health and wider societal gains, costs, cost-effectiveness and equity impacts of health sector interventions, and build capacity in modelling of health sector interventions.

Social and Behavioural Research Unit, University of Otago – provides quality social and behavioural cancer research including about cancer awareness and spiritual.    

Auckland Cancer Society Research Centre (ASRC), Auckland University – regarded internationally as one of the world's leading anti-cancer drug development laboratories.

Malaghan Institute of Medical Research – scientific discoveries and drug developments are at the forefront of cancer cell biology and immune-oncology.

Centre for Translational Cancer Research, University of Otago – translational cancer research bridges the gap between laboratory-based science and treatment in the clinic.

National Cancer Outcome Data

Ministry of Health

Cancer data and statistics providing high-level data on cancer registrations, deaths and survival including:

Information is provided in a variety of forms including published reports and interactive tables and graphs.

Health Quality Safety Commission (HQSC) Atlas

Cancer (data 2008-2012) – gives clinicians, patients and providers an overview of the crude and age-standardised incidence rates both overall and for the five most common cancers in New Zealand, by district health board (DHB).

Cancer Specific Registries

NZ Cancer Registry (NZCR), Ministry of Health – The NZCR is a population-based register of all primary malignant diseases diagnosed in New Zealand, excluding squamous and basal cell skin cancers.

NZ Children’s Cancer Registry (NZCCR) – The NZCCR is a population-based registry which holds verified demographic and treatment information for all children diagnosed with cancer in New Zealand since January 2000. A data request form can be found on the NZ Children’s Cancer Registry website.

Breast Cancer Registry – The Breast Cancer Foundation hosts this registry. Reports and contact details for the various regional registers around NZ can be found on the Breast Cancer Registry website.

Prostate Cancer Outcomes Registry – This is a combined Registry with Australia & New Zealand with data on men with prostate cancer in NZ. Publications can be on the Prostate Cancer Outcomes Registry.

International Research Partnerships

International Agency for Research on Cancer (IARC) – IARC is the specialized cancer agency of the World Health Organization. The objective of the IARC is to promote international collaboration in cancer research.

Cancer Today – Cancer Today provides a suite of data visualization tools to explore estimates of the incidence, mortality, and prevalence of 36 specific cancer types and of all cancer sites combined in 185 countries or territories of the world in 2018, by sex and age group, as part of the GLOBOCAN project.

CONCORD – CONCORD is the global programme for world-wide surveillance of cancer survival. CONCORD-3 updates the world-wide surveillance of cancer survival to 2014. It includes 18 cancers and groups of cancer that collectively represent 75% of the global cancer burden.

International Cancer Benchmarking Partnership (ICBP) – ICBP is an innovative global partnership of clinicians, academics, data experts and policymakers. It is the first of its kind aiming to quantify international differences in cancer survival and to identify factors that might influence observed variations.

Union for International Cancer Control's (UICC) – GLOBOCAN 2018 is an online database providing estimates of incidence and mortality in 185 countries for 36 types of cancer, and for all cancer sites combined.

Global Cancer Observatory (GCO) – Is an interactive web-based platform presenting global cancer statistics to inform cancer control and cancer research. The platform focuses on the visualization of cancer indicators to illustrate the changing scale, epidemiological profile, and impact of the disease worldwide.

Accessing National Data Directly

Ministry of Health

Email [email protected] for customised data extracts from the national health data collections including the NZ Cancer Registry, Radiation Oncology Collection, Faster Cancer Treatment Collection.

NZ Health Survey micro-data

Health Promotion Agency

Accessing HPA’s Microdata for research purposes

Health Quality Safety Commission (HQSC)

Monthly reports on Health Intelligence

Relevant information standards

HISO 10038.3:2011 Interim National Cancer Core Data Definitions Standard – HISO 10038, the National Cancer Core Data Standard, has been developed to provide a consistent approach to the collection and storage of core cancer data in New Zealand.

HISO 10039.2:2011 National Specialist Palliative Care Data Definitions Standard
HISO 10039.1:2011 National Specialist Palliative Care Data Business Process Standard

The National Specialist Palliative Care Data Definition and business process Standards are intended to ensure that minimum agreed specialist palliative care data is collected and stored in a consistent manner wherever it is collected and stored. 

HISO 10001:2017 Ethnicity Data Protocols – The Ethnicity Data Protocols describe the standard procedures for collecting, recording and using data on the ethnicity of people treated by the New Zealand health and disability sector.

HISO 10064:2017 Health Information Governance Guidelines – Provide guidance to the health and disability sector on the safe sharing of health information. It complements the Health Information Security Framework which covers the security of health information wherever it is held. The Guidelines outline policies, procedures and other useful details for health providers who collect and share personal health information, enabling them to do these legally, securely, efficiently and effectively.

The four major subject areas in the guidelines include:

  • maintaining quality and trust
  • upholding consumer rights and maintaining transparency
  • appropriate disclosure and sharing
  • ensuring security and protection of personal health information.

Position Paper on Maori Health Analytics - Age standardisation – The Ministry continues to use and advocate the use of the 2001 Census Maori population as the standard population in Maori Health analytics.

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