Frequently Asked Questions
Access answers to some of the most common questions asked in relation to the Human Services Dataset
Human Services Dataset
What is the Human Services Dataset?
First developed in 2018, the Human Services Dataset (HSDS) is the foundation of the Their Futures Matter Project. The HSDS is unprecedented in scale in NSW, bringing together 27 years of data and over seven million records about children, young people and families, from across government. The records contain de-identified information from all NSW residents born on or after 1 January 1990 (the Primary Cohort) and their relatives (i.e. family members, guardians and carers – the Secondary Cohort).
The NSW Data Partner agencies include:
- Department of Communities and Justice (including the NSW Bureau of Crime Statistics and Research)
- NSW Registry of Births Deaths and Marriages
- Legal Aid NSW
- NSW Police Force
- NSW Department of Education
- NSW Education Standards Authority
- NSW Ministry of Health
- NSW Ambulance and
- Revenue NSW.
The HSDS is used to facilitate the Project Objectives as outlined in the Public Interest Direction and Health Public Interest Direction (PIDs), for the purposes of directing funds and resources towards areas of greatest vulnerability and system gaps, as well as help government to plan.
Information from the dataset will help Government understand and predict demand for services, make evidence-based investment decisions, reduce long-term costs, and improve outcomes for vulnerable children, young people, and families.
It is an extremely rich dataset and promises to be a valuable research asset for understanding more about the most vulnerable in our society and for developing interventions to improve their life outcomes.
What’s included in the Human Services Dataset?
When an individual engages with a government service, data are collected and stored by the government agency. The data includes:
- service usage
- major life events
- outcomes relating to child protection
- mental health
- misuse of alcohol
- other drugs
- parental risk indicators and
- Commonwealth supports including welfare and medical benefits.
These data have been linked and de-identified to form the Human Services Dataset (HSDS). It currently contains over seven million individual data records from 10 NSW Government departments and agencies.
The HSDS contains de-identified information from all NSW residents born after 1 January 1990, and their relatives (including family members, relatives, guardians or carers).
Will the Human Services Dataset continue to be added to over time, with data from other sources?
Yes, our aim is to regularly update the existing dataset with new data, so we can understand different life journeys, service usage patterns, vulnerabilities and outcomes, from early childhood through to age 40.
Who has access to the Human Services Dataset?
Access to the Human Services Dataset is controlled by the Public Interest Direction and Health Public Interest Direction, under which access is only granted to Approved Analysts and approved users (e.g. data administrators).
The data are protected by laws and other measures that guard privacy, including a comprehensive framework of security controls and standards.
These laws, controls and standards ensure that data is held securely. Only approved users can access it, and that it is used specifically for Approved Purposes. Data is securely stored with NSW Data Analytics Centre. The integrated data can only be accessed by Approved Analysts once personal information is removed.
How can I provide feedback or contact Family and Community Services Insights, Analysis and Research (FACSIAR) about the Human Services Dataset?
Governance and privacy protection
Can anyone be identified?
No. All data are de-identified, meaning the aggregate dataset does not contain any personal identifiers such as name or address.
How are the data de-identified?
Personal identifiers such as names, dates of birth and addresses are removed to ensure the data does not identify individuals and privacy is protected. Other measures, such as confidentialisation techniques (combining data categories and expressing data in ranges instead of singular values) are used to ensure that the analysis does not present small groups with unique combinations of characteristics or service delivery history.
How are data collected and integrated?
The Human Services Dataset has been created by combining de-identified data collected through the administration of different NSW Government services and some Commonwealth Government supports (e.g. welfare and medical benefits).
Record linkage occurs through the Centre for Health Record Linkage (CHeReL), a dedicated data linkage unit managed by the NSW Ministry of Health. To protect privacy, the datasets which CHeReL releases after linkage do not contain any personal identifier information. The data fields released for analysis have been approved by each of the data providers.
The datasets released by CHeReL can only be accessed through a protected environment
How are the data kept safe?
The privacy, security and integrity of information collected for the Project is maintained through robust legislative safeguards and data management practices, such as formal Memorandum of Understanding agreements and a comprehensive framework of security controls and standards.
Sharing of the Human Services Dataset is managed according to the NSW Data Sharing Principles (based on the Five Safes framework) which are:
- Safe Projects: Share data only for appropriate and authorised purposes.
- Safe People: Share data only with authorised users.
- Safe Settings: Share data only in a safe and secure environment to minimise the risk of unauthorised access, use or disclosure.
- Safe Data: Apply appropriate protections to the data so that it does not disclose identity.
- Safe Output: Ensure public release of data outputs do not identify people.
Key privacy safeguards include:
- Only limited and authorised personnel within Participating Agencies and Public Sector Agencies, and with appropriate delegation. Have the authority to collect, use and disclose personal or health information in connection with the project.
- Approved Analysts are contractually bound to access and use the data for Approved Purposes only.
- Information is housed in a secure data storage facility and protected in accordance with the NSW Cyber Security Policy.
- The Data Linkage Centre adheres to principles of separation, access controls and information security controls to ensure privacy is maintained throughout the linkage process.
- As part of the Information Protection Gates process, the Data Analytics Entity and Approved Analysts adopt best practice privacy, security and de-identification practices.
- FACSIAR is required to annually report to the NSW Privacy Commissioner on compliance with the Public Interest Direction and Health Public Interest Direction, evaluate risks and ensure the strength of standards and controls by way of an annual audit.
- Policies and procedures including data breach response plan.
What would be the process in the unlikely event of a data breach?
A data breach involving the Human Services Dataset (HSDS) refers to an unauthorised access to or disclosure of personal information, or a loss of personal information that is held in the HSDS.
CHeReL and the NSW Data Analytics Centre are taking all possible measures to protect the privacy and security of the HSDS.
If a data breach is suspected or identified, the Project Team and the Data Custodian (Deputy Secretary of Strategy, Policy and Commissioning within the Department of Communities and Justice) must immediately be notified and undertake the following key steps in collaboration with the Project Team:
- Contain the data breach to prevent any further compromise of personal information
- Assess the data breach by gathering the facts and evaluating the risks, including potential harm to affected individuals and, where possible, taking action to remediate any risk of harm
- Notify the NSW Privacy Commissioner and consult with the NSW Privacy Commissioner about notifying affected individuals, especially if there is likely to be significant harm to the affected individuals. (Significant harm may relate to harm to the individual’s physical or mental wellbeing, financial loss, or damage to their reputation.)
- Review the incident and consider what actions can be taken to prevent future breaches.
The Data Breach Response Plan supports this action. [link]
What are the legal instruments that allow use of Personal and Health Information?
The NSW Privacy Commissioner issued a Public Interest Direction and Health Public Interest Direction (PIDs) allows for collection, use and disclosure of Personal and Health Information for the Human Services Dataset.
The PIDs relate to the Information Protection Principles (IPPs) under the Privacy and Personal Information Protection Act 1998 (PIPP Act) and Health Privacy Principles (HPPs) under the Health Records and Information Privacy Act 2002 (HRIP Act).
Who is responsible for the data?
The Secretary of of the NSW Department of Communities and Justice (DCJ) serves as the Chair of the Stronger Communities Data Partnership and has overriding custodianship, control and responsibility for:
- overall responsibility for data security and governance of the data that enters the Human Services Dataset (HSDS)
- ensuring compliance with the PIDs including all annual reporting, monitoring, audit and disclosure of the HSDS; and
- responding to data breaches and notifying the NSW Privacy Commissioner where appropriate.
Presently the Secretary’s role as Data Custodian has been delegated to the Deputy Secretary, Strategy, Policy and Commissioning.
Can an individual opt-out?
Due to the de-identified nature of the dataset, individuals are not able to opt out as there is no facility to highlight their information within the Human Services Dataset.
Who do I contact if I have an enquiry?
Where can I find out more about privacy of my data, or how to apply for my Personal and Health Information?