DVA Research and Privacy

Research is important for supporting the health and wellbeing of Australia's veterans and their families and this is a key function recognised by DVA’s portfolio legislation and by the Royal Commission into Defence and Veteran Suicide. Research helps to improve understanding of emerging issues facing the serving and ex-serving communities and their families, and is integral to developing effective departmental policy, shaping service delivery responses, and evaluating programs and pilots.

All research supported by DVA is undertaken in accordance with the Privacy Act 1988 (Cth) (Privacy Act) and carried out in such a way as to minimise the intrusion on people’s privacy. 

DVA supports and promotes research in several ways, including:

• Commissioning research projects under contract arrangements, for example through the Applied Research Program
• Assisting researchers to recruit volunteers to participate in DVA-contracted research or evaluations
• Providing data for research and analysis

There are a number of checks and balances in place to protect privacy in relation to research supported by DVA.

Contracted research projects

DVA contracts research (including program evaluations) from a variety of partners and agencies.  These include the Australian Institute of Health and Welfare (AIHW), Phoenix Australia, Australian universities, and other research institutes.

Contracts for DVA-funded research require researchers to comply with the Privacy Act for all aspects of conducting the research.

In addition, research contracted by DVA and involving participation by veterans or families, or their data, is required to obtain approval from the Departments of Defence and Veterans' Affairs Human Research Ethics Committee (DDVA HREC) or equivalent Human Research Ethics Committee (HREC), which includes assessment of privacy implications in accordance with the National Statement on Ethical Conduct in Human Research 2023.  

Assisting researchers to recruit study participants

When DVA commissions a research study, the Department may help the researcher find potential participants for the study if applicable. Usually this is done for an evaluation of a DVA program or service, or sometimes for a research study, such as health research relating to a particular cohort of veterans.

To do this, DVA uses contact information the department has collected from clients (usually the users of the program or service that’s being evaluated) to provide information about the evaluation or research study targeted to potential participants and how the client can take part (for example, providing a website link or a phone number to contact the researcher). This contact is usually done through a mailing house or the contracted research organisation.

When DVA sends information about a research project or an evaluation to a client, taking part in the study is always voluntary. DVA is not told by the researcher who does or doesn’t choose to participate. Any information collected by the researcher is kept confidential and not provided to DVA. Findings from the study are provided to DVA in a summary report where no individual can be identified.

Providing DVA data to researchers

DVA collects data in the course of funding and providing services and entitlements to veterans and families. When analysed all together, this data can be a useful source of information about health and wellbeing issues affecting the veteran population, or the wider community. It can also specifically help to identify emerging needs, plan or design new services, inform policy development, evaluate programs and improve the supports available to veterans and families.

Data for research can be provided through a variety of mechanisms in accordance with privacy law. Data may be provided by DVA for research:

• with the consent of individuals; or 
• through other mechanisms where it is authorised by law or under the Privacy Act.    

When DVA provides data for use in research, a Data Sharing Agreement requires the researcher to comply with the Privacy Act for all aspects of conducting the research.

Using DVA personal information in research with the research participant’s consent

In this scenario, a researcher recruits people into a research study or survey, and specifically asks for each participant’s consent to access their individual data held by DVA, for example about the health or other services they have used. This can help answer a wider range of research questions than would be possible from just the information collected by the researcher and can make the findings of the research more useful. Findings are published in a way that does not identify any individual.

If a DVA client is involved in a research project like this they will be provided with a consent form and an information sheet by the researcher, explaining the study and what’s involved, so they can make an informed decision about whether to participate.

Studies like this must have ethics approval from the DDVA HREC, or equivalent HREC, and follow strict rules about how the data collection and linkage is done, to protect the participants’ privacy.

Using personal information in research with a waiver of consent

In some circumstances, the Privacy Act permits the handling of personal information, including health information for health and medical research purposes, if suitable privacy protections are in place and it is impracticable for researchers to obtain individuals' consent.  

The Privacy Commissioner has approved legally binding guidelines, issued by the National Health and Medical Research Council, which researchers must follow when handling health information for research purposes without individuals' consent. The guidelines also assist Human Research Ethics Committees (HRECs) in deciding whether to approve research applications. 

Guidelines under Section 95 of the Privacy Act 1988, set out procedures that HRECs and researchers must follow when personal information is disclosed from a Commonwealth agency for medical research purposes.

The Guidelines ensure that the public interest in the research activities is considered and balanced with the public interest in the protection of privacy.

Under the Guidelines a range of criteria must be met before such a project is approved, including adequate provisions to protect participants’ privacy.

For example, single-use study ID numbers may be used by an accredited data linkage provider to join together data from more than one source. This means the researcher can be provided with just the relevant, linked dataset without any identifying information, so they don’t know whose data is included and can’t identify any individual.

See further information on the Departments of Defence and Veterans' Affairs Human Research Ethics Committee.

Using de-identified DVA data in research without individual consent

Researchers can apply to DVA to use data about the health services, claims or other entitlements provided by DVA, in a research project.

This sort of research uses anonymised data which has been de-identified to the extent that it is no longer regarded as personal information. Under the Privacy Act, personal information has been de-identified if the information is no longer about an identifiable individual or an individual who is reasonably identifiable.
 
Legal mechanisms under which DVA could provide this sort of data for research include

• the Data Availability and Transparency Act 2022.  In such cases strict conditions under that legislation apply and the Data Commissioner is the relevant regulatory authority.  
• legal compulsion such as a court or Commission of Inquiry order or notice or other legislative requirement to provide information or data.  

More information is available on the Office of the Australian Information Commissioner’s (OAIC) and NHMRC websites.