Participant Information

What is the research study about?

This research study aims to explore health and lifestyle patterns among older gay and bisexual men (GBM), to have a better understanding of how they age, and whether there are any differences among GBM with HIV compared to men without HIV and their experiences of age-related illnesses. A clear understanding of the ageing process among HIV positive men is important to inform future treatment and care for ageing HIV positive people, as well as help policy and planning of health services into the future.

 

You have been invited to take part in the study because you are a gay man aged 45 years or over. Below provides more detail about this study.

Who is conducting this research?

The following researchers from the Kirby Institute, UNSW Sydney are carrying out the study:

  • Kathy Petoumenos

  • Matthew Law

  • Garrett Prestage

  • Mark Polizzotto

  • Mohamed A. Hammoud

 

Research Funder: This research is being conducted and funded by the Kirby Institute UNSW Sydney.

Inclusion/Exclusion Criteria

Before you decide to participate in this research study, we need to ensure that it is ok for you to take part. The research study is looking recruit people who meet the following criteria:

  • Identify as male

  • Aged 45 years or above

  • Currently living in Australia

  • Gay or bisexual; or you have had sex with a male in the last 2 years

 

Do I have to take part in this research study?

Participation in any research study is voluntary. If you do not want to take part, you do not have to.

 

If you do decide to take part, you will be asked to read Participant Information Sheet and your consent online. If you do agree to participate, a copy of the consent form will be emailed to you. If you decide to take part you can change your mind later and withdraw from the study at any stage, for any reason.

 

What does participation in this research require, and are there any risks involved?

 

Online survey

If you decide to take part in the research study, you will be asked to complete a very detailed online survey asking questions about your health, your family health history and lifestyle questions.  This survey is expected to take approximately 15-25 minutes to complete.

 

We don’t expect this questionnaire to cause any harm or discomfort, however if you experience feelings of distress as a result of participation in this study you can let the research team know and they will provide you with assistance.

 

Follow-up surveys

You will also be asked to complete a follow-up online questionnaire every 12-18 months over the next 2-3 years (that is a total of 2 follow-up surveys). These questionnaires will ask you about: your current health and lifestyle behaviours.

 

Data linkage

We plan to access your health information by linking to Australian state and national health registries. The table below lists the information we hope to obtain and where we would get this information from.

What information will we obtain?

  1. Information about any diagnosis of cancer you have had or might have in the future

  2. Information about any hospital admissions you have had or might have in the future

  3. In the event of your death, information about the date and cause of your death

  4. Information about any diagnosis
    of sexually transmitted infections including HIV diagnosis
    (for HIV negative men)

  5. Information about the types of services you have claimed via Medicare

Where will we go for this information?

  1. State and Territory Cancer Registries, Australian Cancer Database

  2. State and Territory hospitalisation datasets (both admitted patients and emergency)

  3. Registries of Births, Deaths and Marriages, National Death Index

  4. State notifiable diseases dataset
    and National HIV Registry

  5. Medicare Australia

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.

 

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.

 

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.

 

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.

 

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 do this by closing the questionnaire. If you withdraw from the research, we will destroy any information that has already been collected. You can withdraw by completing the ‘Withdrawal of Consent Form’ which is provided at the end of this document. Alternatively, you can phone the research team 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 destroyed, 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.

 

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.

 

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:

Research Team Contact

Name: Kathy Petoumenos
Position: Associate Professor
Telephone: +61 (02) 9385 0900
Email: kpetoumenos@kirby.unsw.edu.au

If at any stage during the study you become distressed or require additional support from someone not involved in the research please call:

Name/organisation: Beyond Blue (Free national telephone support 24 hours/7 days a week)
Telephone: 1300 224 636
Website: www.beyondblue.org.au

 

Name/organisation: Lifeline (Free national telephone crisis support 24 hours/7 days a week)

Telephone: 13 11 14

Website: www.lifeline.org.au

 

Name/organisation: QLife (Free national telephone and web counselling for LGBTI people 3pm-12am daily)

Telephone: 1800 184 527

Website: www.qlife.org.au

What if I have a complaint or any concerns about the research study?

If you have a complaint regarding any aspect of the study or the way it is being conducted, please contact the UNSW Human Ethics Coordinator:

Complaints Contact

Position: Human Research Ethics Coordinator
Telephone: + 61 2 9385 6222
Email: humanethics@unsw.edu.au
HC Reference Number: HC180820

About the Kirby

The Kirby Institute is a leading global research institute dedicated to the prevention and treatment of infectious diseases.

We were established in 1986 in response to the then emerging HIV epidemic. We now contribute to knowledge on a broad range of diseases, including viral hepatitis and sexually transmissible infections. 

Click here to find out more

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t: +61 2 9385 0900

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