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 :)70ViewsSign in to react to this post0Comments📝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🙏ViewsSign in to react to this postComments
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: [email protected] or by phone: (08) 8128 4094. Thanks very much for taking the time to consider this opportunity.ViewsSign in to react to this postComments🗣️ Invitation to share your voice: Understanding Cancer Related Stigma Through Lived Experience
BCNA’s Consumer Engagement team is inviting members of our Online Network to share their experiences of stigma and shame following a cancer diagnosis. Cancer related stigma is not only about visible changes. It can be social, cultural, emotional, and systemic. It can affect how people see themselves, how others respond to them, and how safe they feel seeking care or support. These experiences are often deeply personal, and they can vary widely across communities, cultures, and healthcare settings. 🌏 Why your perspective matters In June, a BCNA trained Consumer Representative will be presenting at the Multinational Association of Supportive Cancer Care Australia Conference. This presentation will bring consumer voices into an international conversation about whole person care, supportive care, and the importance of patient partnership in addressing stigma. To ensure this presentation truly reflects the diversity of experiences across Australia, we are gathering insights from our broader network of members. 📝 Take part in the survey By completing this short survey, you will help shape the content of the presentation and strengthen the messages shared with clinicians, program leaders, policy makers, and researchers. Your voice will help ensure lived experience remains central to conversations about stigma, care, and support. 👉 Take the survey here 🗓️ The survey closes on Friday 8 May 2026 📩 If you have any questions, please contact [email protected] Thank you for considering sharing your experience and helping amplify the voices of people affected by cancer.ViewsSign in to react to this postComments📢 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 [email protected] Together, we can push for solutions that truly put patients first. 💙ViewsSign in to react to this postComments🗣️ 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.ViewsSign in to react to this postComments
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/participateViewsSign in to react to this postComment
🌟Join the LeanOn Lymphoedema Self-Management Study
About this opportunity Have you been diagnosed with breast cancer and are currently living with, or at risk of developing, breast cancer-related lymphoedema? Researchers from Flinders University are inviting people to participate in the LeanOn Lymphoedema Self-Management Study, which is evaluating a new online platform designed to support self-care and improve quality of life for people affected by lymphoedema. Your participation will help researchers understand how well the platform supports people in managing their symptoms and navigating their lymphoedema care. What you'll do: If you choose to take part, you will: Access the LeanOn online platform. Explore evidence-based information and self-care resources. Receive a personalised care plan. Use tools to monitor symptoms and track your progress. Complete short surveys at the beginning of the study, and again at 6 and 12 weeks. Optionally participate in a feedback interview. Who can take part? 👥 You may be eligible if you: Have a history of breast cancer. Are currently living with, or at risk of developing, breast cancer-related lymphoedema. Are aged 18 years or older. Can read and understand English. Why get involved? By participating, you'll have the opportunity to: Access a new self-management support platform. Build confidence in managing your lymphoedema. Help improve resources and support available to people affected by breast cancer-related lymphoedema. Contribute to important research that may benefit others in the future. Interested? 📝 To learn more, read the Participant Information Sheet and register your interest here: If you have any questions, please contact the research team: Navaz Naghavi – [email protected] | 0433 805 014 Katia Ferrar – [email protected] | 0411 234 885ViewsSign in to react to this postComments📣Have you experienced differences in surgical quotes? We’d love to hear from you.
We’re looking to connect with our members living in Victoria who have received one quoted fee for surgery, and then either secured or discovered a lower cost elsewhere. Your experience can help highlight why greater transparency in healthcare costs is so important. 🌿 These insights will support advocacy efforts around the need for a transparent costs register, a topic very important to us here at BCNA that we will be working towards later this year. If this sounds like you, or someone you know, please comment below "learn more" to share your experience. Every story makes a difference in creating a fairer, more informed system for all. ✨ViewsSign in to react to this postComments📢 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 ❤️ViewsSign in to react to this postComments
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