Friday update 16/2/2018
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
Online
Network Teleconference
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.
Confidentiality
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.
Tagging conversations
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.
New
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.
Community
highlights
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.
Join our campaign to have ribociclib and palbociclib subsidised in Australia
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.
Could really use some inspiration from a positive
experience
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.
So scared about surgery tomorrow
Discussions with most comments
Disappointed in The Beacons name change
Over the next few Friday updates
we will be introducing our online network moderators. I thought I would start with myself
Giovanna_BCNA
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
Latest
forums
https://www.bcna.org.au/news-events/events/information-forums/
The
financial impact of breast cancer
https://www.bcna.org.au/about-us/advocacy/research-reports/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
Giovanna
Comments
-
Thanks @ Giovanna and nice to know a little bit about the online moderators.And Thankyou to the BCNA for listening to members concerns about the proposed name change for The Beacon - it means a lot to many of us.2
-
Fantastic Friday update. Thank you @Giovanna_BCNA xx2
-
Thanks @Giovanna_BCNA Excellent reminder about the confidentiality of the public forum - I hope I haven't slipped there. I'd just like to say about the "Port or not to Port" discussion thread being one of the most discussed. I started that discussion as research for myself and it was so incredibly helpful. Everyone who contributed enabled me to make that decision on a "personal level' (not anecdotal) evidential basis. I think that is a major side of this forum that is so valuable. So, again, thanks all.5
-
I forgot the conference sorry.2
-
Thanks Marianne.
:0
0 -
0
