ANNETTE BEATTIE: Hello everyone. It's great to be here today with you and to share the work of
my colleagues and our online community members in increasing psychosocial
support through digital channels. So why provide cancer information and support
online? Well in 2009, Cancer Council launched an online community forum to
meet a growing need for online support for people affected by cancer. The
Australian Institute of Health and Welfare has estimated that around 135
thousand new cases of cancer will be diagnosed in Australia during 2017. It is
estimated that 82,000 newly diagnosed people will search online for
information each year, with 42,000 visiting an online support group forum
at least once. Research has also shown that people accessing cancer information
and support via digital channels can gain a sense of control, reduce feelings
of anxiety, improve compliance, create realistic expectations, promote their
self-care and generate feelings of safety and security. So it was within
this context of growing numbers of people affected by cancer needing
support and also evidence demonstrating an increase in people seeking
information and support in a digital environment. The
Cancer Council online community aims to provide an online platform for people
affected by cancer to connect, to share their experiences and to find
information and support in a safe forum. It was in 2016 that our Cancer Council
New South Wales digital, IT and cancer support teams agreed on a strategy to
actually repurpose our existing online forum and improve it with our Cancer
Council online community platform with improved functionality and using
state-of-the-art technology. We found it immensely valuable to
integrate a comprehensive user testing research schedule from the early stages
of the project and work hand-in-glove with our community members. Results from
this testing either validated or drove positive changes, in the site design, the
language we used and also the functionalities of this site. So we
launched in November 2016. The Cancer Council Online Community information and
support is available digitally on any device - including mobiles - and is
available 24/7. When people visit the Cancer Council Online Community home
page, they are immediately presented with bespoke forum pathways structured for
the three key communities that we're looking to support: I have cancer, for
people who are diagnosed with cancer who are experiencing treatment and other
cancer related issues. I had cancer, which is for people who have recovered from
their cancer treatment and are experiencing the impacts of survivorship
and family, friends and carers - everyone else who may be affected by a cancer
diagnosis of a loved one or someone they care for. Through blogs, discussion
forums and Internet support groups, members can discuss their experiences,
share their stories, tips and coping strategies and to help normalise
concerns and reduce that real sense of isolation. While the online community is
peer-to-peer, it is also moderated by a team of professional staff and that is
to ensure that it is in a supporting and engaged safe online environment for all
members. People experience differing levels of distress so there are links to
access crisis support on every community page, whether that be quick access to our
Cancer Council health professional staff or a third party crisis support service.
Anyone can view the content on Cancer Council Online Community including
online discussions, blogs and all of our public information. However, users must
register as members to engage via our community posts and interact with other
members in our forums. The registration process is streamlined to ensure ease in
creating your personal profile and to have that anonymity of the environment,
with moderators that screen and welcome new members with information and support,
that may assist them with their own individual needs. It is here that members
share real and live human experiences, with shared similarities across their
stories and unique peer support relationships that are formed. As we know,
cancer brings out every kind of emotion in people. Each experience is as unique as
the individual themselves and that there are more often similarities. When people
come to the online community, they may have just been diagnosed or they may be
experiencing remission. They may be a wife who has just lost her husband or a
child or they may be someone who has a colleague at work or a neighbor down
the street that has cancer-- who's experiencing cancer and they have
questions. In short, they are all experiencing some kind of emotion from
shock and disbelief to anxiety, perhaps depression and to grief, sadness,
or simply curiosity. These feelings have been shared in our online forum by
someone who's caring for her husband who has stage 3 testicular cancer. She's the
sole breadwinner with her husband unwell and so she's working and also wrangling
with their two sons. She shares, "My husband feels that he's the only one
going through this rollercoaster and has become self-centered and seems incapable
of being able to make adult decisions. After months of emotional upheaval
trying to keep the family together and relatively normal, I was told that I
solely was tearing our family apart and that I was angry and selfish. So it
turns out, no matter how much you give, sometimes people just don't seem to
appreciate it." Within the forum, seven others have responded to her post with
examples. "You are definitely not alone. We don't have kids but my partner's
personality has changed significantly since his cancer has returned. It's
partly to do with medication, partly to do with what I think might be depression."
After sharing ways of coping, the person then says, a'I hope there's something here
that will be helpful in your situation. I know how hard it is even to begin
to see a way out of where you are at the moment. I'll do my best to help in any
way I can." Along with the 7 forum discussions, this particular string of
conversation has been viewed just over 1,600 times. Discussion forums
are complemented by blogs - similar to keeping a journal or a diary. Members
have the opportunity to express themselves and tell their cancer story.
They also can tag key words or phrases that might spark an interest or speak to
somebody else within the community. We also have special audiences that identify
as being benefiting from a closed support group. Such groups include cancer
types that may share sensitive issues, so perhaps anal cancer or gynecological
cancers. Also community focus groups, who may share lifestyle matters such as
LGBTI or perhaps our Aboriginal communities. Cancer information and
support pages also provide links to evidence-based information in digital
publications, national programs of practical and emotional support and now
Cancer Council websites in each state and territory so that regional specific
information and support is available as well.
But the real value is in hearing from our online community members
in sharing their experience.
VIDEO: I'm Emma. I live in Sydney, Australia. I was
diagnosed with thyroid cancer. I think the Cancer Council Online
Community is actually brilliant. I wish that I'd come across it sooner and I think
it's great now that it's relaunching in a really accessible way. People are
either in the same situation or have been and they don't have any investment
in how your emotions might affect them. I was shocked. He gets in-- he's the
emotional one, I'm not. Support to me, is the main thing. Yes, support and when
they've got someone to talk to, they just change. You know, they feel as if they're
not alone. Sometimes you'd get up during the night when you're worrying about
something, it was just nice to know that you could just get online and somewhere,
someone would be online and you just chat to them. Cancer diagnosis takes everything you
understand about the world, turns it upside down and then flips it inside out.
My name's Ben. I'm from Sydney and I had bowel cancer. It was important to me as a
male - and a young male - to seek out the experiences and connections with other
men going through a similar experience. And the online space allows you to do
that because there are no borders. My name is Melissa Quinn and I'm from
Casino in New South Wales. I found with the Cancer Council forum, that there was
a lot of different information from various people that have suffered or are
suffering from cancer and they express what they're feeling or what
they've been going through with treatment and family and things like
that. It's important that people speak up and if they need help, they need to reach
out.
ANNETTE BEATTIE: So you can see that the user experience is integral to and will continue to
inform us as to how the Cancer Council Online Community is working. We are
undertaking a three year cumulative evaluation plan aiming to provide
evidence of the reach of the community, is the new platform retaining and
growing its membership base, how appropriate is the community, is the new
platform reaching its target audience? Effectiveness: to what extent is the
community and the platform engaging, supporting and informing our members and
of course, the efficiency: whether it's a cost-effective way to deliver support
and information. We'll be using various methods to draw data and conduct
thematic analysis. We've seen positive steady growth in our membership since
launching in November, with our targets to the 30th of June. Membership at that
time had increased by 20% to just over 5,000, with engagement since the November
launch at 113,000 page views - which is an average
of about 16,000 per month. And almost 30,000 total visits, which is an average
of about 4,000 per month. And we do see with our members profiles that we are
reaching our target audiences at this time. 38% of people accessing the
community have been diagnosed with cancer, 36% are family, friends and carers
of someone with cancer and 16% are people who have recovered from their
cancer treatment and are encountering their survivorship issues. So where to
next? The Cancer Council Online Community vision includes: constantly improving
personalised experience for community members tailored to their interests,
their expertise and preferences based on community contributions
and interests, increasing our target internet support groups with an event
solution to enable our virtual guest speakers to address issues that are
raised in the community and also to have seminars within the community. We will
also look at how our community is growing in the very important aspect of
having it well moderated to ensure that very safe and appropriate space for our
community members. So we will increase our moderation capacity as the community
grows and we look forward to actually working closely with our peer support
volunteers to support that moderation with us. So thank you so very much for
having me here today to take you through what we're doing
with our online community. I would like to invite you to have a look to to visit
the community yourselves and I'd also like to acknowledge the great team of
people who have shared their expertise in collaborating on this project and, as
I said, particularly our online community members. Thank you.
For more infomation >> Digital literacy – The virtual classroom - Duration: 4:38. 
For more infomation >> Fiscalização Ambiental Digital - Duration: 1:32. 
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