To look at these questions, we need your consent for the items listed above. These items do not require any extra participation on your behalf, beyond giving your consent to allow us to collect information from other sources.

 

Consenting to participation in this part of the study (linking your data to state and national health registries listed above) is not necessary for you to take part on the first survey. You will not be excluded from participation if you would prefer not to participate in this part of the study.

 

We would also like to seek additional consent to link your details to other research studies lead at the Kirby Institute that you might also be enrolled in. This is also an optional consent. If you choose not to have your details linked to other research studies lead by the Kirby Institute, then this does not exclude you from taking part in the main study.

 

Finally, we would seek additional consent to contact you if there are new research studies that the Kirby Institute is undertaking that you might be of interest.

 

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What are the possible benefits to participation?

There will be no clear benefit to you from your participation in this research. However, this study will further medical knowledge and may improve the clinical care of HIV positive people as they age in the future.

 

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What will happen to information about me?

Submission of the online questionnaire is an indication of your consent. By clicking the ‘I agree to participate’ button you are providing your permission for the research team to collect and use information about you for the research study.

 

Survey data will be collected using a secure web application for building and managing online surveys and databases. Data entered into this application runs on the UNSW’s servers, which provides increased security.

 

Your data will be kept for a minimum period of 7 years after the project’s completion, or for as long as relevant to the research question. We will store information about you in a non-identifiable format at UNSW Sydney. Your information will only be used for the purposes to which you consent.

 

If you provide your contact details as part of the additional consent process for data linkage, your contact details will be stored separately from your survey responses. This will ensure that your responses remain confidential.

 

Your information will be stored securely. Your information will only be used for the purpose of this study project and it will not be disclosed without your permission, except as required by law. You will not be identified in any publications arising from the study.

 

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How and when will I find out what the results of the research study are?

It is anticipated that the results of this study will be published and or presented in a variety of forums. In any publication and/or presentation, information will be provided in such a way that you cannot be identified, except with your express permission.

 

These results will also be made available on the project website.

 

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What if I want to withdraw from the research study?

If you do consent to participate in the online survey, you may withdraw at any time. You can withdraw by completing the ‘Withdrawal of Consent Form’ which is provided at the end of this document. Alternatively, you can withdraw online by clicking on the ‘Unsubscribe/manage your consent’ link that appears at the bottom of all email communications from the PAWS study, or  you can phone the research team (contact details at the end of this form) and tell them you no longer want to participate..

 

If you decide to withdraw your consent, the information that has already been collected will be kept. This will help the researchers to ensure that the results of the research can be measured properly. If you would like all the information about you removed entirely, then please inform the researchers either in writing or by telephone (details are provided at the end of this form). If you choose to withdraw, from the study – the researchers will not access your information through linkage to other health registries or send any follow-up emails or reminders.

 

Your decision not to participate or to withdraw from the study, will not affect your relationship with UNSW Sydney, or any state/territory health department, or clinical or community service.

 

The information you provide is personal information for the purposes of the Privacy and Personal Information Protection Act 1998 (NSW). You have the right of access to personal information held about you by the University, the right to request correction and amendment of it, and the right to make a compliant about a breach of the Information Protection Principles as contained in the PPIP Act.  Further information on how the University protects personal information is available in the UNSW Privacy Management Plan.

 

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What should I do if I have further questions about my involvement
in the research study?

The person you may need to contact will depend on the nature of your query. If you require further information regarding this study or if you have any problems which may be related to your involvement in the study, you can contact the following member/s of the research team: