Thank you to the 98 voters who have shared the reasons behind their passive level of engagement in this community. If you haven't yet responded and would like to do so, the link below will take you to the poll:
healthunlocked.com/cllsuppo....
Those that are more involved and are interested in the responses should be able to view them here:
healthunlocked.com/cllsuppo...
Neil
Photo: Guinea flower in close-up. My thanks to Jay for the identification.
98 voters out of over 1000 members signed on.. Less than 10% voted
Sadly that does not give the administrators a workable cross section of the visitors to this forum.
Even the 53 replies does not tell us much, as many replies are from the same source.
I would still say that privacy remains an issue, and that the answer is two linked websites as Chris, CLLCanada, has suggested.
Thanks for the update Neil
Many thanks for your post Dick, we have registered your earlier requests and are looking into solutions for the futre, will come back with developments, (now probably after the holidays)., CLLSA will continue to evaluate community members poll replies and site use here and work with members, volunteers, HU and our own website developers to improve this great facility .
The poll has already proved very useful and will remain open to allow others to answer anonymously or comment in the replies thread if they wish.
Yes "If you haven't yet responded and would like to do so, the link below will take you to the poll":
Hi Kwenda,
Maybe I misunderstood, but I assumed the poll was specifically for people who don't usually engage. So I didn't vote, because I do engage (in spite of the site having some problems.) I expect other regular users thought the same as me, so didn't vote. Unless we know how many "passive" members we have, it's hard to work out percentages of the target audience who responded.
Out of the 1000 who are signed on, not all will have wanted to follow up on it. They might not even have had CLL, but joined for some other reason.
Not wanting to sound pernickity about all this, but I think the 98 voters in this poll do still give us a valuable idea of how people are thinking.
Paula
Paula is correct about the intended audience of the poll. Given concerns about privacy was the least popular response with just 4 votes, I'd say it is safe to say that moving to two linked websites isn't going to encourage much of an increase in participation by those that are at present less involved. It also doesn't provide much encouragement that there would be adequate funding to support the development and support of a dual site. But perhaps privacy is more of a concern for those that are more involved?
Neil
I have browsed this forum since Dx (and subsequently discovering this place!), but not fully involved myself since due to a mixture of being incredibly busy, and spending the majority of my internet time on my favourite football team's message board lol. With this in mind, I can't fully comment on the layout / usability of it but I can say that from a first glance it looks pretty straightforward, and well laid out.
I have found it extremely helpful though. Especially on that first night of my Dx, which helped settle any doubts I may have had about being 'alone' with CLL. This feeling was massive.
I will personally endeavour to post more going forward, but I fully understand some peoples' reluctance, moreso after my GF's surprise when I sent her my first post. She's just recovered from BC and would never have done that, but everyone is different I guess.
Hi Spike27
When I was at clinic, same one as you I'm guessing I mentioned CLLSA and HU to a guy who had been newly diagnosed He was honest and said "not for me, I don't want to know". His way of dealing was to ignore it . I think no matter what I said he'd decided a forum would be doom and gloom.
You're right, we all find our own way, being informed and knowing you are not alone, is not for everyone, but works for me too.
Best wishes
Bubnjay
Newly diagnosed with Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma - CLL/SLL or just found us? This post is for you!
I have just had my latest blood count and my platelets are 130. Should I be worried? I have read that the normal count is 130-400.Can you think off a poll that investigates an aspect of CLL life that may make a difference?With a CLL diagnosis, knowing more about your immune system could save your life!How to pretty up your posts and questions with bold, italicised and underlined text
