Data Linkage Confidentiality & Privacy Explained
Department of Social Services and Services Australia consent information
We are asking permission to link your Centrelink information and/or your Medicare records (MBS and/or PBS) to your BNLA survey answers. This will increase the overall value of the BNLA study for research purposes. The Department of Social Services and Services Australia keep a record of your Centrelink payments and Medicare service use over time and by attaching this information to your BNLA survey data, we gain a more complete picture of study participants’ health and access to Government benefits over time. Linking this information also means that we can make the survey shorter, as we don’t need to ask you detailed questions about these things.
Personal information, such as name, date of birth, Medicare number, Centrelink Customer Reference Number and address, is stored separately from survey responses and from any data we get from other sources. No-one can identify you from your survey answers. Furthermore, personal information is not shared with anyone else and only authorised members of the study team have access to it.
Consenting to linkage involves the BNLA study accessing information about your income support payments from the Department of Social Services, as well information from Services Australia about services provided to you under the MBS and/or PBS. This includes past information from January 2012 until the end of the study, or until you notify the study that you no longer consent to having your data linked to your BNLA survey data.
We would like you to complete the Centrelink and/or Services Australia Consent Forms and ask for your Centrelink Customer Reference Number and Medicare number to help us link your information. Please make sure you read the information sheet attached to the consent forms.
BNLA values your privacy
Your privacy is very important to us. The study is bound by Commonwealth and State privacy laws and we will protect your anonymity and the confidentiality of your information to the fullest possible extent, within the limits of the law.
Strict procedures are followed by everyone involved in the management and running of the study to ensure that only authorised people have access to the information provided to us and that all interviewers, researchers and others involved in the study comply with the Privacy Act 1988.
To ensure that your survey information is kept secure, we use strong encryption technology. This means that the information you send is not able to be read by anyone but those authorised to have access. To protect your stored data, multilevel password protection is used on all electronic storage systems.
Any data received for the study, including your linked Centrelink and/or MBS and/or PBS and/or address details, is only ever used for research purposes and for maintaining contact with you for the purposes of the study. To ensure security and confidentiality, all survey information will be stored, analysed and reported on with your identifying details removed.
Other researchers may apply to use the study data. Any information released to researchers will be delivered in a format in which it is not possible to identify individual participants in the study (e.g., excludes names and addresses). In addition, all researchers using the data are required to sign a deed of confidentiality, which prohibits them from trying to identify any participants or sharing any potentially identifiable information.
All the providers involved in collecting the survey information adhere to the Australian Market and Social Research Society (AMSRS) code of professional practice and ISO 20252 standards.
What happens to my information?
Your personal information (such as your name, date of birth, address, Medicare number and Centrelink Customer Reference Number) will never be analysed together with your survey responses or linked data. Also, your survey answers will not be looked at on their own, but will be combined with those of other participants and analysed as a group.
Your contact information will be securely stored for at least seven years at the Australian Institute of Family Studies following the completion of the study. After this period, records will be destroyed in a manner appropriate to the security classification of the record content. If the organisation responsible for future data collection phases of the study changes, the Australian Institute of Family Studies will be required to disclose your information to that organisation.
Giving us your information is voluntary and if you choose not to participate anymore, the BNLA study would no longer collect data from you. If you had previously provided consent for data linkage, you would need to explicitly notify the study if you wanted to withdraw your consent to any further data linkage. Data previously released to researchers would continue to be used and form part of the BNLA study.
Data linkage frequently asked questions
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Question: Why do you want to link my Centrelink/Medicare records to my BNLA data?
Answer: Linking these records to BNLA helps researchers and the Government gain a better picture of migrants’ health history and income support without having to ask lots of detailed questions during the survey. This saves time for you and the interviewer.
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Question: How will this help current and future humanitarian migrants?
Answer: Linking data for individuals from multiple data sources can tell a bigger story than analysing data from a single source. It allows us to answer research questions using data that is already collected and saves asking participants detailed questions about the medical services they use. For example, if just Medicare records are analysed, we wouldn’t know about migrants’ pre-arrival experiences as this information is not available in Medicare records. By linking Medicare records with BNLA (which has information about migrants’ pre-arrival experiences) we can better understand whether some groups have different service needs than others.
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Question: Can I just consent to one and not the other?
Answer: Yes. Even consenting to just Medicare or just Centrelink data linkage will be very beneficial for researchers’ understanding of humanitarian migrants’ service needs.
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Question: What will this information be used for?
Answer: Linked data is used for research purposes only to help us understand the Government service needs of humanitarian migrants and how they can be improved.
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Question: How do I know this information is safe after what happened with OPTUS?
Answer: AIFS and Kantar have rigorous data security protocols related to how data is stored, who can access it and when it is destroyed (e.g. ISO 20252 and ISO 27001 standards). Contact details held by Kantar and BNLA responses held by AIFS are never stored together. NOBODY will access both. You cannot be identified from BNLA survey data or the linked records.
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Question: Will Centrelink and Medicare see my survey responses?
Will Centrelink know about payments I am making to help my family overseas?
Answer: No. BNLA survey responses will not be shared with Medicare or Centrelink. Rather, Medicare and Centrelink records would be coming to BNLA. Only approved researchers have access to BNLA survey responses and the linked data.
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Question: Will my Centrelink contact details be linked to BNLA?
Answer: No. Contact details won’t be linked to BNLA survey responses. By law, staff who have access to participants’ contact information (e.g. Kantar) are not allowed to have access to BNLA survey responses or Centrelink/Medicare data (and vice versa).
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Question: What if I don’t receive any payments from Centrelink? Is it still worthwhile consenting?
Answer: Yes. The fact that you don’t receive payments is still of interest to researchers.
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Question: Why are you asking me to do this now after 10 years?
Answer: The original BNLA project was only ever expected to run for five years. This current survey will add extra value to the original BNLA by learning about migrants’ needs over a longer 10-year timeframe. By linking Medicare and Centrelink data, the value of the original BNLA project can be extended even more, even if there are no more surveys.
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Question: What happens if I change my mind?
Answer: You can withdraw your consent to data linkage at any time before the data is released to researchers (Estimated September 2023). Simply email info@bnla.com.au
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Question: What is data linkage?
Answer: Data linkage is a process to combine information from more than one data source that relates to the same individual. This is done securely and participants’ responses to the BNLA survey are not shared with Centrelink or Medicare. The linked data does not contain any information that can identify individuals.
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Question: Who links the data?
Answer: Data linkage will be managed by AIFS Data Linkage Unit. AIFS is authorised as a Commonwealth integrating authority, which means they have passed tests which ensure that strict processes are in place to ensure the privacy of participants.
It’s important to note that the AIFS BNLA team and the AIFS data linkage team are separate, and do not share participant data with each other. There are also data linkage teams in Medicare and Centrelink. They both follow strict processes to protect participants’ privacy and keep their data safe.
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Question: How does data linkage take place?
Answer: Data Linkage is a rigorous four-step process. This ensures that contact details are not attached to your BNLA survey responses.
1. Kantar has a list containing participant contact details for the purposes of conducting the BNLA survey. This list also contains a ‘linkage key’ which is a unique code for each respondent but that cannot be linked to BNLA survey responses on its own. This list is provided to the Medicare/Centrelink data linkage team.
2. Medicare/Centrelink data linkage staff then match the contact details of their clients to the contact details in the Kantar list. All contact details are then removed leaving only the ‘linkage key’ and the Medicare/Centrelink records. This is then sent to the AIFS data linkage team.
3. The AIFS data linkage team then add the ‘BNLA Study ID’ to the list using the ‘linkage key’ and it is then sent to the AIFS BNLA study team.
4. The AIFS BNLA Study Team, can then link the Medicare/Centrelink records to the BNLA survey responses using the ‘BNLA Study ID’.
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Question: How are my survey responses kept private and confidential after linkage?
Answer: Strict security and access controls are in place at every stage of the linkage process. Two key principles are in place to ensure privacy and confidentiality.
1. De-identified data: Does not contain any information that could be used to identify people, such as name, address and date of birth.
2. Confidentialised data: Data are de-identified AND any other information that may allow an individual to be identified is removed or altered. For example, if a person has a very rare disease, this information will be modified or removed to ensure the privacy of that person.
Data linkage is a rigorous process that is subject to numerous approval processes. All need to be satisfied that the privacy of participants will be preserved. Data is never released in a way that would enable users to identify individuals in the study.
