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 :)
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/participateThe 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 ....🗣️ Share your views: A survey of Australian cancer patients regarding current patient education practices
You can participate in this study if you have received treatment for a cancer diagnosis in the past 24 months. Researchers from Monash University are conducting a survey that aims to identify the current practice of oncology nursing education in Australia. It intends to identify if a consistent and holistic approach to education is being provided and what factors may prevent this from occurring. The survey will explore your experience in relation to the education you received by oncology nurses prior to commencing your initial treatment for your cancer diagnosis. At the conclusion of the survey, you will be taken to a second survey to register your interest to participant in a focus group to discuss your experiences. If you decide to leave your contact details, the researchers will follow up with you and provide further information on what is involved in the focus group. You would then need to provide written consent to participate. For more information and to participate in the study please click the link below: Click here to participate🗣️ Share your views: A survey of Australian cancer patients regarding current patient education practices
You can participate in this study if you have received treatment for a cancer diagnosis in the past 24 months. Researchers from Monash University are conducting a survey that aims to identify the current practice of oncology nursing education in Australia. It intends to identify if a consistent and holistic approach to education is being provided and what factors may prevent this from occurring. The survey will explore your experience in relation to the education you received by oncology nurses prior to commencing your initial treatment for your cancer diagnosis. At the conclusion of the survey, you will be taken to a second survey to register your interest to participant in a focus group to discuss your experiences. If you decide to leave your contact details, the researchers will follow up with you and provide further information on what is involved in the focus group. You would then need to provide written consent to participate. For more information and to participate in the study please click the link below: Click here to participate📣 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
Fertility and breast cancer survey
We’d like to invite young women living outside metropolitan areas to participate in an online survey. The survey will help us learn more about the information young women with breast cancer are getting – or not getting – about their fertility options. The results of this survey will help BCNA develop new fertility resources. The criteria for completing the survey are: · Diagnosed in last five years · Diagnosed with early breast cancer (NOT DCIS, LCIS or metastatic breast cancer) · Currently 45 years or under · Living in a non-metro area All survey results will be anonymous. BCNA will not know whether or not you have completed the survey. The choice to participate or not won’t change your relationship with BCNA. Some anonymous quotes from survey responses may be used by BCNA in resources and publications. The survey will take approximately 15 minutes to complete. We appreciate your time in answering these questions. Link to complete the survey: https://www.surveymonkey.com/r/BCNAfertilitysurvey. If you would like to share your fertility experience and don’t meet the criteria for this survey, please email policy@bcna.org.au. The survey will close on Monday 9 July at 5.00 pm (AEST)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
