The purpose is to capture population data about population screening, breast cancer diagnosis, types of breast cancer diagnosed and treatment outcomes specific to the LGBTIQA+ community. The data includes:

• Participation in the breast screening program
• Information about the risk of breast cancer
• Types of breast cancer presentation
• Data related to breast cancer diagnosis of clients undergoing hormone therapy treatment for more than 5 years
• Data related to the presentation of breast cancer and age(s) compared to the general population
• Client experience data related LGBTIQA+ client experience and breast screening (this will be part of the project captured by our biannual survey data)

You are eligible to participate in this study because you are a participant in the BreastScreen ACT (BSACT) program for the early detection of breast cancer.

Participation in this study is voluntary. It is completely up to you whether you participate. If you decide not to participate, it will not affect the care you receive now or in the future.

You may withdraw from the study at any time, for any reason or no reason. Please tell the study team that you wish to withdraw from the study. Information that has been collected about you, prior to your withdrawal, will continue to be used in the data analysis. No new information will be collected or used after you have withdrawn from the study.

This study will be conducted over 4 years. This study will not affect treatment options in any way. This study will use LGBTIQA+ data and compare this against the general population data captured by BSACT for AIHW annual data report for analysis. This study will give us an opportunity to identify trends in LGBTIQA+ population participation; risk analysis; types of cancer presentation; age of cancer presentation and treatment outcomes within the LGBTIQA+ community.

The study is supported by BreastScreen ACT. Participation in this study will not cost you anything. Participants will not be paid for their involvement.

There is no physical risk when taking part in this study. We will capture data related to breast cancer detection within the LGBTIQA+ community and the results will be reported in summary only (without any identification details).

As this study involves data collection only, the participation in the program will be unchanged and is not impacted in any way. There is no risk of the study causing complications in relation to treatment. The information collected will be presented in summary. This same data is reported on for the overall population that participate in the BreastScreen Australia Program. This study is designed to capture this same information specifically for the ACT LGBTIQA+ population group for analysis. If you suffer any distress from participating in this study, please contact the research team.

This study is being conducted by BreastScreen ACT Quality and Promotions Team, supported by the CHS Synergy Research Team. The study is being funded by BreastScreen ACT. No investigator or member of research staff will receive a personal financial benefit from your involvement in this study. The study team declare no personal conflict of interest relevant to the undertaking of this study.

The people treating you will know whether you are participating in this study. All staff within the service work within confidentiality guidelines as required by law. All information is captured within our BreastScreen Information System and managed like any other medical information within CHS services. Only de-identified data will be used in this project. Only the researchers within the BSACT team will have access to your details and results. Digital research data will be held securely within the BreastScreen Information System, with physical research data stored securely within the BreastScreen ACT Canberra City Health Centre storage facility along with your BreastScreen medical records.

Results will be captured and presented in summary to inform future policy for the participation of the LGBTIQA+ community . In any publication, information will be provided in such a way that you cannot be identified. In addition to this, dissemination of results may be published in a peer reviewed journal.

This is a population data research study and does not/will not have any impact on treatment if they are required after diagnosis of breast cancer through the BreastScreen ACT program.

When you have read this information, the BreastScreen ACT Quality and Promotions Team will discuss it with you and answer any queries you may have. If you would like to know more at any stage, please do not hesitate to contact:

PH: 5124 1821 or 6205 5053 Email: breastscreen@act.gov.au

As this project relates to population data in relation to screening and breast cancer diagnosis it will not impact you in the context of treatments, procedures etc. The capacity for the research project to cause injury or physical harm is not a risk.

This study has been approved by the ACT Health Human Research Ethics Committee (or sub-committee). If you have any concerns or complaints about the conduct of this study, and do not feel comfortable discussing this with study staff, you may contact the Committee secretariat who is nominated to receive complaints about research projects. You should contact the secretariat on (02) 5124 7968 or ethics@act.gov.au.