Introduction - Erana from BCNA
Hi everyone! My name is Erana, and I am the Consumer Engagement Coordinator at BCNA. I work with our wonderful Consumer Representatives and oversee our Review and Survey Group. In the coming months, you may notice a few posts from me highlighting external research and survey opportunities that you can participate in. These opportunities have been thoroughly reviewed and approved by BCNA to ensure it is of high quality, relevant to our Policy & Advocacy Strategy, organisational priorities and will lead to tangible benefits for those affected by breast cancer. While we typically share them through our Review and Survey Group communications, we thought it would be beneficial to also share them here for those who aren’t currently part of the Review and Survey Group. If you'd like to join the group, feel free to sign up here Review and Survey Group. If you have any questions, please don’t hesitate to send through a comment or message and we'll do our best to respond as quickly as possible. Thanks, Erana :)📝Survey: Were you Diagnosed with Breast Cancer Between Screens?
Breast Cancer Network Australia is inviting women in our network to share their experiences of being diagnosed with breast cancer soon after receiving a BreastScreen Australia “all clear” result , often called an interval cancer. ✨ In March, a BCNA‑trained Consumer Representative will be presenting at the BreastScreen Australia Conference, bringing real women's voices directly into discussions about screening, communication, and care. To ensure the presentation truly reflects these experiences from across Australia, we’re gathering insights from our Online Network community who have received an interval cancer diagnosis. 📝By completing this short survey, you’ll help shape the presentation and strengthen the messages delivered to clinicians, program leaders, policymakers, and researchers. Your voice matters – help shape a national conversation 💬 👉 Take the survey: https://www.surveymonkey.com/r/DXXGBZW 🗓 Closes: Friday, 06 February 2026 Thank you for sharing your experience and helping to shape the future of breast cancer healthcare🙏
Research opportunity: Survey about the well-being of people affected by breast cancer
Hi all, I wanted to let you know about a research project you may be interested in participating in. Researchers at the South Australian Health and Medical Research Institute (SAHMRI) are conducting a project aimed at finding the best ways to collect information about people’s health and well-being after receiving a diagnosis of breast cancer, and beyond diagnosis and treatment. This information would provide vital information to doctors, health professionals and clinicians about issues and gaps in breast cancer care after a breast cancer diagnosis. The researchers are inviting you to participate a survey to help them understand how information about people’s health and wellbeing after a breast cancer diagnosis can be connected in a regular, non-intrusive and meaningful way. Who can participate? You can participate in this study if you: Have been diagnosed with breast cancer Have been diagnosed within the last five years. What does the study involve? If you are interested in the study, you will be asked to participate in an online survey. If you participate, you will be asked questions about your diagnosis and treatment, and your physical and emotional well-being. The survey will take about 30 minutes to complete. At the end, you will be asked whether you would like to receive a summary of results and whether you would like to participate in follow up research. There is no obligation to take part in any follow up information. Your responses to the online survey will be anonymous. How do I take part? You can take the online survey here: https://qualtrics.flinders.edu.au/jfe/form/SV_bf8MQTS7Q57eX7D. If you have any questions or would like to find out more information please contact Dr Kerry Ettridge, Senior Behavioural Scientist, by email: Kerry.ettridge@sahmri.com or by phone: (08) 8128 4094. Thanks very much for taking the time to consider this opportunity.🗣️ Share your views: Finding My Way Advanced+
Finding My Way-Advanced was one of the first self-guided web-based programs designed to improve wellbeing for people with metastatic breast cancer. Flinders University are now seeking participants to take part in Finding My Way-Advanced+, which aims to test whether adding human support and/or guidance to Finding My Way-Advanced, improves how much people use, and benefit from, the program. The aim is to find out whether guidance improves engagement with the program and outcomes, such as quality of life and distress, and if this differs by whether people received guidance via email, phone-call, or video-call. Recruitment is open for 12 months, with the closing date expected to be mid-2026. You can particpate in this program if you are a person who has been diagnosed with metastatic breast cancer. If you are interested, simply complete the following baseline survey and the researchers will be in contact with you shortly; https://redcap.link/findingmywayadvancedplus.
Victoria is doing an Inquiry into women & pain - feel free to participate!
If you live in Victoria you may like to take part in this survey if you have/do experience pain of any sort - whether from your BC or anything else. .... The survey is open until 31st July 2024 ... The government wants to know what your experiences are with pain and accessing care for your pain condition. Understanding your experiences and concerns will help to inform the Inquiry into Women’s Pain and make recommendations to improve care that meets the needs of Victorian girls and women over 12 years of age. We want to hear about: the experiences of Victorian girls and women with pain. This includes all pain and is not limited to pelvic pain. the experiences Victorian girls and women have in accessing Victorian health services to manage their pain, including strengths, challenges, and opportunities for improvement. the experience of healthcare workers who work with women and girls with pain. You can fill out the survey on this page. The survey will close at 5:00pm, Wednesday 31 July 2024. If you would like to write a longer contribution to the Inquiry into Women’s Pain, please see the submissions page: Inquiry into Women's Pain submissions (health.vic.gov.au) For more information about the program of work the Department of Health is leading to change the way women's health issues are treated, please see: Women's Health and Wellbeing Program To do the actual survey - click on this link below: https://engage.vic.gov.au/project/inquiry-into-womens-pain-survey/participate📢 Help Us Advocate for Better Access to Day Chemo & Day Procedures 🌟
We’re looking to connect with patients who are currently stuck on public waiting lists, especially those waiting for day procedures or who are travelling long distances just to receive day chemotherapy. If this sounds like you (or someone you know), we’d love to hear from you. 💡 Why we’re gathering volunteers We’re working on an initiative to highlight how shifting more elective procedures (including all day chemotherapy) into day hospitals could make a meaningful difference. Day hospitals can perform these treatments at around half the cost of overnight hospitals. If more care moved into this setting, it could help reduce pressure on private health insurance premiums and create a more efficient system overall. At the same time, we believe public patients shouldn’t be left waiting months when many of these procedures could be done safely and promptly in day hospitals. Your stories can help demonstrate why this matters. 🤝 How you can help We’re seeking volunteers willing to share their experience (big or small) to support this advocacy work. Your voice could help drive change toward a system that is fairer, faster, and more affordable. If you’re interested in being involved or would like more information, please get in touch with Jannette at 0419 204 059 or admin@executivecounsel.com.au Together, we can push for solutions that truly put patients first. 💙📣 Share your views: All.Can Patient & Carer Experience Survey
All.Can Australia is conducting a survey that seeks to collect perspectives of Australians who have experienced any type and stage of cancer, as well as their caregivers, to identify key gaps in cancer care treatment and support to shape the future of cancer care in Australia. The aim of this retrospective cross-sectional study is to obtain qualitative data on the experiences of patients and carers who have been directly impacted by cancer with the current processes of diagnosis, treatment and post-cancer care across Australia. 📝 The anonymous online questionnaire comprises of 40 questions which takes around 20 minutes and includes questions about your experience with diagnosis, treatment, and post-cancer care. Your insights will help improve care for others across Australia. ✅ This project has ethics approval from The University of Melbourne (Project ID 32576). 👉 Click here for survey. To find out more about the project, please read the project plain language statement attached. Thank you for helping make a difference 💗The Lobular Breast Cancer Alliance survey for those with ILC - closes Dec 26th
The Lobular Breast Cancer Alliance is conducting a survey of people living with invasive lobular carcinoma and their experiences with surveillance, meaning the monitoring for a local recurrence or disease progression. While the survey may not benefit you directly, it may be of interest to clinicians and researchers, which could inspire additional much needed research in this area. The survey should take no longer than 10 minutes to complete and will close December 26, https://www.surveymonkey.com/r/surveillancesurvey2024 I've just done it ....📢 Have you ever faced a big bill, or a long journey just to get a diagnostic breast scan? We want to hear from you.
When you find a concerning lump or notable change in your breast, one of the most important things that you should be able to access quickly and safely is the answer to: is this breast cancer? We know that for too many people in our community, the pathway to diagnosis is full of barriers: high out‑of‑pocket costs, long waitlists, no public imaging options, or hours of travel just to access essential scans. ✨ As part of our End‑of‑Financial‑Year national advocacy campaign, we’re calling for fair and equitable access to diagnostic imaging for all Australians. To do that, we need real people to share their experiences and stories that show what is happening right now. BCNA is seeking lived experiences from anyone who has faced challenges such as: 🔸 Travelling long distances or interstate for a diagnostic breast scan 🔸 No public diagnostic facility available in your region 🔸 Significant out‑of‑pocket costs for essential imaging 🔸 Long waitlists that delayed your diagnosis 🔸 Impacts on treatment, health outcomes, or mental wellbeing due to these delays. 💪 Your story is powerful. It can help us demonstrate that access to a diagnosis is not a luxury - it’s a right. Your story will help us advocate for a system where every Australian gets the answers they need, regardless of their bank balance or their postcode. If you’re interested in having your voice heard and suppotring BCNA's advocacy efforts, please complete our Expression of Interest form here; 👉 https://formstack.io/907FC All stories will be handled with the utmost care and confidentiality by our Communications department. Thank you for helping us shape a better system where every Australian can get timely, equitable access to the diagnostic care they deserve ❤️📢 Have you ever faced a big bill, or a long journey just to get a diagnostic breast scan? We want to hear from you.
When you find a concerning lump or notable change in your breast, one of the most important things that you should be able to access quickly and safely is the answer to: is this breast cancer? We know that for too many people in our community, the pathway to diagnosis is full of barriers: high out‑of‑pocket costs, long waitlists, no public imaging options, or hours of travel just to access essential scans. ✨ As part of our End‑of‑Financial‑Year national advocacy campaign, we’re calling for fair and equitable access to diagnostic imaging for all Australians. To do that, we need real people to share their experiences and stories that show what is happening right now. BCNA is seeking lived experiences from anyone who has faced challenges such as: 🔸 Travelling long distances or interstate for a diagnostic breast scan 🔸 No public diagnostic facility available in your region 🔸 Significant out‑of‑pocket costs for essential imaging 🔸 Long waitlists that delayed your diagnosis 🔸 Impacts on treatment, health outcomes, or mental wellbeing due to these delays. 💪 Your story is powerful. It can help us demonstrate that access to a diagnosis is not a luxury - it’s a right. Your story will help us advocate for a system where every Australian gets the answers they need, regardless of their bank balance or their postcode. If you’re interested in having your voice heard and suppotring BCNA's advocacy efforts, please complete our Expression of Interest form here; 👉 https://formstack.io/907FC All stories will be handled with the utmost care and confidentiality by our Communications department. Thank you for helping us shape a better system where every Australian can get timely, equitable access to the diagnostic care they deserve ❤️
