Data collections

The ongoing collection of population health data is used to gain a comprehensive picture of health and wellbeing and to monitor trends over time for key health indicators, such as prevalence of smoking and overweight and obesity.

Information about the health of populations offers governments and researchers important clues about health problems and emerging issues.

The findings provide evidence to:

  • inform decisions about priorities for public health and wellbeing plans
  • support strategic planning, reporting and decision-making
  • evaluate programs and initiatives
  • inform and refine public health policies
  • improve the quality and delivery of health services.

Data from our data collections are available within the Statistics and Indicators tab.

Data are reported in the biennial Chief Health Officer’s Report and contribute to various ACT Government reports, including (but not limited to) Focus On reports and the ACT Wellbeing Framework.

Epidemiology Survey Program

ACT General Health Survey (ACTGHS)

ACT Health has been conducting this yearly phone survey with randomly-selected households in the ACT since 2007. The survey collects information about the health and lifestyles of ACT residents.

Traditionally, the ACT General Health Survey collects information from adults and children about risk factors for chronic disease such as poor nutrition, low levels of physical activity, obesity, alcohol consumption and smoking.

In 2019, the survey topics were extended to include broader factors that influence health and wellbeing such as resilience and adapting to change, social supports, perceptions of safety, financial stressors, experiences of discrimination and gender equity. 

The survey has a three year cycle, where the child and adult risk factor questionnaire is conducted for two consecutive years and the adult only wellbeing questionnaire is conducted every third year. 

Data from the ACTGHS are reported in the Chief Health Officer’s Report and are available within the Statistics and Indicators tab within the HealthStats ACT website. The data also contributes to various ACT Government reports, including Focus On reports, the ACT Wellbeing Framework and the Community Services Directorate report: ‘A Picture of ACT’s Children and Young People’.

Questionnaires:

2019 ACTGHS questionnaire

2020 ACTGHS questionnaire

2021 ACTGHS questionnaire

First results reports:

2019 First Results Report

For more information, email HealthSurvey@act.gov.au.

Year 7 Health Survey

The Year 7 Health Survey (Y7HS) formerly known as the Year 7 Health Check Survey, is an annual health and wellbeing survey of Year 7 students in the ACT.

The Y7HS is made available to all secondary schools in the ACT each year. For public schools, it is delivered alongside the annual School Satisfaction Survey with an opt-out consent to minimise the burden to schools and their students. For non-government schools, a survey link is provided to students via a parent letter to complete at a time convenient for the student.

Findings of the survey will be reported at a population level and will be made available to the public annually through the ACT Health website. Results from the Y7HS will be used to guide the future delivery of programs and services, helping the ACT Government to continue to meet the needs of this age group and respond to emerging issues.

Survey reports

Resources

Public consultation

Contact us

For more information about the Y7HS, please email the project team at Y7HS@act.gov.au

ACT Physical Activity and Nutrition Survey (ACTPANS)

The ACTPANS has been conducted every three years since 2006. It is administered by professional survey staff, on behalf of ACT Health, in the classroom setting.

Information about physical activity, nutrition, healthy weight status, attitudes and general wellbeing indicators are collected. Height and weight are also measured.

Questionnaire items include:

  • eating patterns and food intake levels
  • physical activity and sedentary behaviour
  • attitudes to physical activity       
  • general health and wellbeing.

In 2018, 1,491 ACT Year 6 students from 30 primary schools across the ACT participated in the ACTPANS.

2021 ACTPANS was postponed to 2022 due to COVID related school disruptions in the ACT. Data collection for the 2022 ACTPANS commenced from Term 2 of 2022.

Data from the ACTPANS are reported in the Chief Health Officer’s Report and are available within the Statistics and Indicators tab within the HealthStats ACT website.

Questionnaires:

2018 ACTPANS questionnaire

2021/22 ACTPANS questionnaire

For more information, contact: HealthSurvey@act.gov.au.

Australian Secondary Students' Alcohol and Drug (ASSAD) survey

The Australian Secondary Students’ Alcohol & Drug (ASSAD) survey commenced in 1984 and has been conducted every three years in the ACT since 1996. The ASSAD survey was designed to provide estimates of the current prevalence of tobacco, alcohol and illicit substance use among Australian secondary school students (aged 12 to 17 years of age) and to examine trends in their use over time.

In 2022, the ACT will also collect information about:

  • general wellbeing
  • relationships with family and friends
  • use of leisure time
  • nutrition 
  • physical activity and sedentary behaviour
  • self-reported height and weight
  • sun protection.

A standard sampling procedure, administration method and core questionnaire is used throughout all states and territories of Australia. The survey is coordinated nationally by the Cancer Council Victoria, with each of the states and territories managing the data collection within their own jurisdiction.

The last survey was conducted in 2017; ACT secondary students completed a total of 1,491 surveys.

The 2020 survey was postponed until 2022 due to COVID. The survey will be administered online for the first time in 2022.

Data from the ACT component of the ASSAD survey are reported in the Chief Health Officer’s Report and are available within the Statistics and Indicators tab within the HealthStats ACT website. The national report is available on the Department of Health website.

Questionnaires:

2017 ACT ASSAD survey questionnaire

2022 ACT ASSAD survey questionnaire

For more information, visit: Cancer Council Victoria or the National Drug Strategy, or email HealthSurvey@act.gov.au.

ACT Cancer Registry

About the ACT Cancer Registry

The ACT Cancer Registry (ACTCR) registers all new cases of cancer diagnosed in ACT residents (excluding non-melanoma skin cancer) and all deaths of people with cancer to gain a comprehensive picture of the burden of cancer across the population. It is managed by the ACT Health Directorate.

How are cancer registry data used?

Monitoring cancer rates

The information collected in the ACTCR is used to improve cancer prevention programs, evaluate how well cancer screening programs are working, and to provide statistics to better plan cancer health services and policies for cancer prevention and health care.  The data are also used to monitor the health outcomes of people who are diagnosed with and treated for cancer in the ACT.

To view summary cancer statistics, visit: stats.health.act.gov.au.

Cancer research and quality improvement

In recent years, researchers have made great progress in understanding what causes cancer and how best to diagnose and treat it. This work relies on accurate and complete information about the people who develop cancer. Cancer registry data is also used for a range of quality improvement purposes, such as performance and accountability indicator reporting, to monitor variation in healthcare delivery and to promote the application of best practice in the care of people diagnosed with cancer.

Sources of cancer registry data

Collection of cancer data is required by law in all Australian states and territories. In the ACT it is collected under the Public Health  Regulation 2000.

In the ACT it is mandatory for pathology laboratories, public and private hospitals, and aged care facilities to report all cancer diagnoses.

What information about cancer patients is recorded in the cancer registry?

Information includes patient demographics as well as detailed information about the type of cancer on all cancers notified to the ACTCR.

Further expansion of the ACTCR to include a broader range of data items, such as cancer stage and clinical data relating to episodes of care, is being considered.

Confidentiality, security, and data sharing

The ACTCR has a legal requirement to protect patient confidentiality. Therefore, the ACTCR has very strict policies defining how data are collected and stored and the approvals required for any data release.

Access to cancer registry data

Some ACT-level cancer data can be found on this website. Further jurisdictional-level cancer data and reporting, including for the ACT, can be found on the Australian Institute of Health and Welfare (AIHW) website:

https://www.aihw.gov.au/reports-data/health-conditions-disability-deaths/cancer/overview

To submit a formal request for ACTCR data, please submit a Data Request form

The ACTCR considers all data requests on a case-by-case basis and works with applicants to determine the most appropriate data for their needs. This can be through the provision of aggregate (tabulated) data, or de-identified (where information that could directly identify individuals has been removed) unit record data. The latter generally requires applicants to seek approval from the ACT Health Human Research Ethics Committee prior to requesting data access

Contact us

Director, ACT Cancer Registries

GPO Box 825 Canberra ACT 2601

CancerRegistry@act.gov.au

(02) 5124 9473.

Prostate Cancer Outcomes Registry

Prostate cancer is the most common cancer diagnosed in Australian men. The number of men diagnosed with prostate cancer is growing and is thought to be due to early  and increased detection, and the ageing and growth of the population.

The ACT Prostate Cancer Outcomes Registry (PCOR-ACT) is the ACT arm of the Prostate Cancer Outcomes Registry Australia and New Zealand (PCOR-ANZ); a bi-national initiative funded in part by the Movember® Foundation to establish a clinical quality registry to improve health outcomes for men living with prostate cancer in Australia and New Zealand.

The PCOR-ACT holds a broad range of diagnosis, treatment and quality-of-life information on men diagnosed with and/or treated for prostate cancer in the ACT since 1 July 2015. The Registry monitors care provided to men diagnosed with prostate cancer, including diagnosis, treatment, complications and both short- and longer-term outcomes of care.  This information is being used for performance reporting, as well as to identify trends and determine whether gaps or anomalies exist in service provision.

Limited ACT-level information can be found in PCOR-ANZ Annual Reports: https://prostatecancerregistry.org/publications/annual-reports/.

For access to more detailed data from the PCOR-ACT, such as tabulations, or de-identified unit record data, please complete the Data Request form.

About the Prostate Cancer Outcomes Registry 

If you have been diagnosed with prostate cancer and have been approached to participate in the ACT Prostate Cancer Outcomes Registry, we encourage you to get involved. Your contribution will help towards better understanding and managing prostate cancer disease and ensuring that men are receiving the best possible healthcare services both within ACT and across Australia.

If you would like to participate in the initiative or would like more information, please contact us at PCORACT@act.gov.au, or on (02) 5124 9492.

We understand the diagnosis of prostate cancer has a big impact on men and their families, friends and carers. ACT Prostate Cancer Outcomes Registry staff do not have the skills or expertise to provide a specialised counselling service or give professional medical advice.

We encourage men to speak to their doctors if they are concerned about their diagnosis. They may also find the following support sites useful:

Cancer Council ACT

Prostate Cancer Foundation of Australia

Cancer Voices Australia

ACT Maternal and Perinatal Data Collection

The ACT Maternal Perinatal Data Collection is a population-based collection covering all births in ACT hospitals (public and private) and home births in the ACT. It does not include interstate births where the mother is usually an ACT resident.

ACT Health receives notifications from patient administrative and clinical records, with the information usually collected by midwives or other birth attendants. These data are used for service planning, monitoring and internal and public reporting. The data also contribute to the National Perinatal Data Collection maintained by the Australian Institute of Health and Welfare (AIHW).

The data collection includes all live births and still births of at least 20 weeks gestation or at least 400 grams birthweight. Information collected has both data items relating to the mother—including demographic characteristics and factors relating to the pregnancy, labour and birth—and data items relating to the baby—including birth status (live birth or stillbirth), sex, gestational age at birth, birthweight and neonatal morbidity and deaths.

Notifications to the ACT Maternal Perinatal Data Collection undergo a validation process with the notifier (mostly hospitals), that includes linking to the ACT Admitted Patient Care data. This linking is used to ascertain if there are records that have not yet been submitted by the hospitals and to provide coding for maternal condition and complications.

For more information about the ACT Maternal Perinatal Data Collection, please contact HealthInfo@act.gov.au.

Requesting data

To request data from the following sources, please submit the online Data Request form outlining what data is required and what it will be used for. Once received, your data request will be submitted to the appropriate data custodian for approval.

  • ACT General Health Survey
  • Year 7 Health Check Survey
  • ACT Physical Activity and Nutrition Survey
  • Australian Secondary Students’ Alcohol and Drug survey (ACT data only)
  • ACT Cancer Registry
  • ACT Prostate Cancer Outcomes Registry
  • ACT Maternal and Perinatal Data Collection

To request Kindergarten Health Check data, please contact the Kindergarten Health Check Research Nurse on (02) 5124 4949 or KindyHealthAUGP@act.gov.au.

To request ACT Admitted Patient Care Collection or ACT Emergency Department data, please complete the online data request form.

Data linkage

Data linkage is a process of linking information from people held in different data collections together to create a study dataset that contains information about a person, group or population that is relevant to specific health conditions, treatments or outcomes. For example, to identify modifiable risk factors for birth outcomes, or to compare differences in outcomes for diseases such as cardiovascular disease or cancer between different population groups.

Data linkage can be used for epidemiological research, population health surveillance, health system performance monitoring, and program evaluation, as well as social research. It helps to meet government needs for information and to provide a way for researchers to study health and social factors in populations.

The Epidemiology Section is a founding partner of the Centre for Health Record Linkage (CHeReL) at the NSW Ministry of Health and facilitates the provision of data to researchers and government agencies. CHeReL provides the technical infrastructure to enable data linkage services. The following health datasets have been integrated into CHeReL and are available for linkage studies:

  • ACT Admitted Patient Collection
  • ACT Cancer Registry
  • ACT Emergency Department Information System
  • ACT Maternal Perinatal Data Collection
  • ACT Notifiable Diseases Management System
  • ACT Births, Deaths and Marriages birth registrations
  • ACT Births, Deaths and Marriages death registrations
  • Australian Early Development Census
  • ACT Kindergarten Health Check
  • ACT Australia and New Zealand Dialysis and Transplant Registry
  • ACT Ambulance Service data.

How data linkage works

Data custodians separate the content of their datasets into demographic and clinical files and retain the clinical file on-premises.

Data Managers in the Epidemiology Section provide the demographic datasets to CHeReL with an encrypted source record number and the demographic details for each record in their dataset. Under the current ACT model, no clinical information is provided to CHeReL.  Custodians retain all clinical data on-premises.

Once CHeReL receives these demographic files, a probabilistic linkage algorithm calculates a score for each field that indicates for any pair of records, how likely it is that they both refer to the same person.

Pairs of records above a certain score are considered to be a link.  Pairs below a certain score are considered to be a non-link.  Scores in between (in other words, possible matches) often require clerical review to be resolved.

CHeReL assigns a Person ID to records that are estimated to belong to the same person.  The Person ID and associated source record numbers create the basic foundation of the Master Linkage Key.  The Master Linkage Key thereafter provides a ‘pointer’ to records for a given person in different datasets.  The Person ID never leaves CHeReL.

When a researcher is approved to perform a data linkage study, CHeReL assigns a project-specific person number (PPN) for each person in the linked dataset.

CHeReL sends the custodian a list of PPNs for each person in the study, along with the encrypted record numbers.

Now that the PPNs and the encrypted record IDs are with the custodian, the data custodian decrypts the source record number and merges the PPN with the clinical variables approved for use in the project.

The source record ID is removed and the researcher is provided with the PPN and the clinical information.

Using linked data

Data linkage is conducted on a project-by-project basis, with each project requiring the approval of relevant Human Research Ethics Committees and data custodians.

The following list provides an overview of the process of accessing linked data from the Data Linkage Team at ACT Health. 

  1. Plan your study.
  2. Contact the CHeReL to discuss your project.
  3. Complete the CHeReL Combined Protocol and Application for Data form.
  4. Complete the required ethics approval forms.
  5. Provide document to the CHeReL for a technical feasibility review.
  6. Obtain ethics approvals from ACT Health Human Research Ethics Committee and from Calvary Public Hospital Bruce Human Research Ethics Committee (if seeking Calvary Public Hospital data).
  7. Approach ACT Health Data Linkage Team for in-principle data custodian sign-off.
  8. The ACT Health Data Linkage Team will coordinate approval from data custodians and notify the researcher and the CHeReL of approval.
  9. CHeReL will process the data linkage.
  10. The ACT Health Data Linkage Team will seek data custodian approval to release the linked data and release the linked data to the researcher.
  11. Data analysis is conducted with findings provided to the ACT Health Data Linkage Team before release or publications of results.

For more information about data linkage in the ACT, please refer to the Data Linkage Framework and the ACT Health Data linkage technical manual.

To contact the ACT Health Data Linkage Team, please email HealthInfo@act.gov.au.

Page last updated on: 11 Oct 2022