📣 Survey Invitation: Tucatinib (Tukysa) and Metastatic Breast Cancer
Dear members, We'd like to invite you to take part in a short survey about tucatinib (Tukysa) for people with human epidermal growth factor receptor 2 positive (HER2+) metastatic breast cancer. This survey is for people who have either taken tucatinib (Tukysa), or tried to access it. Your feedback will help us understand the day-to-day impact of accessing (or not accessing) this treatment, including physical health, emotional wellbeing, financial pressures, and overall quality of life. The insights you share will be used to support a consumer submission to the Pharmaceutical Benefits Advisory Committee (PBAC), the body that decides which medicines are made more affordable through the Pharmaceutical Benefits Scheme (PBS). Take the survey here: https://www.surveymonkey.com/r/LJXB3KT The survey is open until 12 September. The survey is anonymous, voluntary, and takes about 10 minutes to complete. You can skip any question you don’t feel comfortable answering. Thank you for lending your voice to this important advocacy. If you have any questions or concerns about this survey, please contact policy@bcna.org.au
Adelaide-based members: Opportunity to participate in Breast Cancer documentary
Hi everyone! I'm sharing an opportunity to participate in a documentary being created as part of a second-year film project at the Academy of Interactive Entertainment (AIE). The focus of the documentary to share women’s experiences of breast cancer, including diagnosis and treatment with the goal to highlight resilience and offer support to others through real stories. The project is looking for women at different stages of their diagnosis to interview. All stories are welcome, and the project can be adapted to different experiences. You can take part in this study if you: Have been diagnosed with or are living with breast cancer Live in Adelaide What will participation involve? The filmmaker is seeking six women to interview for this documentary. Filming will take place over three consecutive days, with scheduled dates between February 28 and March 28. Specific dates will be confirmed closer to the time. The documentary will have 2 key ideas: Frank interviews about their breast cancer diagnosis experience A fun photo shoot full of colour, laughter and positivity Interviewees will be provided lunch and there will be a Mental Health Nurse available on set for the full shoot days to provide care and support to both the volunteer participants and the crew. Please note, as this is a university project, there is no budget available for reimbursements. At this stage, this documentary will be for internal use only. If you would like to register your interest, please fill out the Google Form here. Thanks! Erana BCNA Consumer Engagement Coordinator
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 ....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 :)Online Network Survey - Results
Thank you for taking part in our digital research As some of you may know, we need to move the Online Network to a new platform, as part of a wider project to improve our online resources. We ran a survey and conducted interviews with members of the network to gather information such as: What works well and what needs to be improved What features and functions are most important. Thank you to everyone who was able to take part and provide feedback on their experiences with the current platform. Your feedback is helping us make decisions around features and functionality (Survey results attached). The project team is busy working with our technical partners. This is always a lengthy process, so you won’t see any changes for a couple of months. However, the project team will very soon start communicating with our network before the upcoming changes. If you have any questions or future feedback, please let us know via this post or through our Helpline team.Have your say on the Online Network
Later this year, we need to move the Online Network to a new platform as part of a wider project to improve our online resources. To help us make the best decisions around functionality, processes, look and feel, and more, we invite you to complete a short, anonymous survey. All questions are optional and you can use any device: Online Network user survey. The survey closes at the end of Monday 27 May. Next month we will let you know the results of the survey and give you information about the change. If you have any questions please contact the Project Manager Tamsin Stanford tstanford@bcna.org.auVictoria 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/participateQld Survey on shaping the future of Cancer Care - FINISHES TODAY ..... so jump on NOW!
Have your say and help shape the future of cancer care in Queensland. This survey finishes today .... so jump on NOW if you'd like to add your 'two bits' .... https://www.health.qld.gov.au/system-governance/strategic-direction/plans/queensland-cancer-strategyBCNA Member Survey
We are excited to be launching a national member survey for people impacted by breast cancer to better understand how you use BCNA’s services and resources. We have designed this survey in partnership with researchers from the University of Sydney and representatives from our membership groups including from our rural and regional, metastatic, LGBTIQ+ reference groups and SATT program graduates. So many things have changed since we last conducted a national survey in 2017 that informed the State of the Nation report. This survey will guide our priorities and work to ensure that we keep delivering the highest quality information and support to our members. Healthcare has also changed a lot over the last five years, especially since COVID-19. We are launching a separate survey for health professionals who deliver breast cancer care so that we can improve our engagement across the sector. Link: https://redcap.sydney.edu.au/surveys/?s=LHJDPKM8TJ3RRXLDRegional and Rural Information forums - We want your feedback!
The below post was recently added to the private group Living in Regional, Rural and Remote areas . If you are not a member of this group and live rural, regional or remote, please consider joining. (Refer to the Monash Modified Model (MMM) that classifies locations according to geographical remoteness via the link https://www.health.gov.au/resources/publications/modified-monash-model-fact-sheet Hi Members, BCNA will be delivering information forums to regional, rural and remote communities, more details on the locations and dates will be shared soon. Traditionally these have been delivered as full day events from 9.30-3.00. We acknowledge the current cost of living crisis, work and personal commitments might make it challenging for people to attend a whole day event. So we are hoping to get a better understanding on preferred timings from our members. If you could please take the time to complete this short survey to help with the planning of the upcoming forums. https://forms.office.com/Pages/ResponsePage.aspx?id=dgJVk0E5rkyacWRewHkFZW92LAal_5RAn6S9wZSqa_hURU9VU1NLNjlTWTlORFJMTTNHTlVFQlE5Qi4u
