Hello everyone and welcome to Fridays update.
It’s been a busy couple of week at BCNA. You may have read that the results are in from the Beacon name survey. Thank you to everyone for your feedback, the newsletter will remain as The Beacon. I have attached the link and response from Christine Nolan, CEO of BCNA Results of the Beacon name survey
On Tuesday evening this week we held a teleconference with some of our online community group leaders and major contributors. We had seven members of our online community participate along with Marianne, Kirsten and myself. We also had another eight members email us their thoughts. We had a very productive discussion about the roles and expectations of the BCNA moderators, our group leaders and those who provide a major contribution to the online community. It was a great opportunity to chat with some of our fabulous members and the discussion was very fruitful. I’m in the process of writing a summary of the meeting and outcomes which we will post on the network soon. We are hoping to have a teleconference like this every six months and will invite different members of the community along to ensure we get a good representation.
in the online space
I wanted to raise the issue of confidentiality in the online space and remind everyone that the online network is a public space. Whilst the private groups are private, the general network areas are public and can be viewed by anyone and can also show up in Google searches. Therefore, please remember not to reveal personal or private information about others and only reveal as much about yourself as you feel comfortable sharing. If you are concerned about any information you have posted contact @Marianne_BCNA or myself and we can edit this for you.
Personal Identifiable Information
I have noticed lately that members are sharing personally identifiable information. That is, information that can be used on its own or with other information to identify, contact, or locate a person. This includes information such as first and last name, suburb you live in and phone numbers. As moderators, we try very hard to protect your personally identifiable information for your safety and security. To ensure your privacy we will edit out full names, phone numbers and other information that may identify you. When signing off on posts, we encourage you to use your username and not your real name. I’m in the process of updating our community guidelines and will share these shortly.
A gentle reminder, when commencing a new conversation online, please remember to add a tag. You will notice on the right hand side of the screen some popular tags. This will help identify conversations and will assist our online community when searching for specific topics.
online network members
We have had 42 new members join our online network in the last two weeks. Welcome everyone! Here’s some information to get you going.
Don’t forget, you can always direct message one of the BCNA moderators if you have any questions or need any support @Giovanna_BCNA, @Marianne_BCNA, @Rosie_BCNA, @Tracey_BCNA or @Riki_BCNA or call our Helpline on 1800 500 258.
BCNA is calling
on its members to write to their local federal Member of Parliament and state
or territory Senators urging them to support the listing of ribociclib and
palbociclib on the PBS. Thank you to
those of you that have already written a letter. The link below will take you to the online
discussion where you can read a couple of letters that have already been submitted by our members.
I wanted to highlight the post below as it really shows how supportive, welcoming and responsive our online community is in supporting new members to the site. A recent member asked for some inspiration from others experiences as she had just been diagnosed.
Another post from one of our
members expressed how scared she was about having her port removed and
asking the online community to share their experiences. There were messages of support, encouragement and acknowledgement regarding her fears and concerns.
Discussions with most comments
Over the next few Friday updates we will be introducing our online network moderators. I thought I would start with myself
Hi everyone, I started working at BCNA in late September 2017 as one of the Senior Helpline Officers and one of the moderators of the online network My background is nursing and I have specialized and worked as a cancer nurse for over 20 years. My experience is varied and I have worked in some of the major public hospitals within Melbourne. From there I moved into the community and spent a long period of time working at Cancer Council Victoria, within their cancer information and support service. Prior to commencing at BCNA I worked within the Wellness and Supportive Care team at the Olivia Newton John Cancer Wellness & Research Centre. I enjoy working in the community setting and look forward to learning more about the advocacy and policy work conducted by BCNA. I am passionate about providing cancer information and supportive cancer care to Australians affected by breast cancer.
Links to relevant information on BCNA Website
BCNA Latest news
The financial impact of breast cancer
We want to ensure that the Friday update is relevant and interesting to our members so please give us any feedback or ideas you may have about what to include. Please contact @Giovanna_BCNA
Have a great weekend everyone