We have just added a feed from this HealthUnlocked community to our CLL Community home page at:
patientpower.info/chronic-l... So now any unlocked posts you put on HU may be found by about 10,000 more people on patientpower.info. We are very appreciative of the partnership with the CLLSA and HU. If we all work together we can accelerate change in CLL.
Best Wishes, Andrew Schorr, living with CLL since 1996, Seattle
As Andrew says "any unlocked posts you put on HU may be found by about 10,000 more people on patientpower.info."
This can be quickly verified by looking at the latest posts today; the locked post between this one and "CLL specialists ?" is NOT visible on Patient Power's website.
Further, only the post heading and the introductory text is shown on the Patient Power website. If readers of that website want to read more, they are directed to this HU community and will not be able to read locked posts unless they join this community.
We've just seen the start of increasing cooperation on CLL among European countries, so it is good to see the predominantly US based Patient Power viewers will now see more CLL related discussions with a more Eurocentric and indeed international flavour.
Neil
I would agree that this is an excellent way to spread the good news about research matters, and the new drugs that are now becoming available. Full credit should be made to Andrew for his work on this side of things.
HOWEVER I still believe that there are many who access CLL forums, such as Health Unlocked, and who are looking for emotional support.
It thus follows that they might prefer a totally locked down private forum space for private communications, and thus TWO SEPARATE websites, that are linked, is the way forwards.
Some who accidentally do not click on the small locked button are going to be horrified that their comments are suddenly now for worldwide viewing.
Thus we get more ‘ lurkers ‘ and fewer ‘ posters ‘, which is not a good trend as news about perhaps some side effects of a new drug are never known.
Dick
Thanks, Kwenda, for bringing to my attention the fact that there's a small locked button you can click on to keep your posts private! Where will I find it?
Hi SycamoreN, you will find this right at the bottom of the page just above the 'Post, Submit' button.
Aussieneil has written a post showing how to write and submit posts, check the pinned posts.
Dick
Many thanks, Dick. I'll use it for my next post.
My how to post submission has been superseded by site upgrade, but the HU Help pages explains it all: support.healthunlocked.com/
Check out the following articles in the Connect section:
* How To Create A Post
* How To Reply To A Post
* How To Edit A Post Or Reply
Neil
Thanks, Neil
Hi Andrew thanks for the heads up that we are now connected to PatientPower. This will bring a vital resource to readers using the PatientPower CLL health centre and may enrich our community here as now more may become connected. Welcome to those visiting for the first time.
The longest standing feeds we have in use are with our own website and with NHS England which have been in operation since we started here nearly two years ago, they have proved very successful in connecting us with each other: nhs.uk/Conditions/leukaemia... nhs.uk/conditions/leukaemia... cllsupport.org.uk/
Admin will monitor community activity and site analytics to see what impact this new connection has on the groups activity. We already receive over 90,000 visits a month here, and over 50% of our members were active last month, either reading 3/4 pages per visit or creating content.
Dick thanks for reminding people to lock posts if they wish to keep their content exclusively to the community group. We recommend members protect their anonymity at all times, to use avatars and appropriate user names when registering and not to post contact information or content on the forum that may enable them to be identified by others. Even if locked your posts are visible to everyone who joins the community.
There is information in "Help" (green bar above) to aid with navigation, guidelines and security. There are guidance posts by AussieNeil (admin). we will update these and re-post guidance in a prominent position.
Members when you create a post always complete the bottom question:
Who is this post for?
Everyone?
Community?
Unfortunately the default position is set in the "Everyone" position , for the moment you must click on "community" if you wish your posts to be visible only to community members.
Remember if you post a comment to a thread that is unlocked your comment is available to search engines.
Dick, CLLSA have written to HU following a few requests for an alternative solution and are awaiting their report and will come back soon.
Nick/Admin
For ease of reference, here's the link to the pinned post on techniques that you can use to maintain your privacy/anonymity/security while using this community web site, many of which are applicable to other websites you may use.
Online security starts with You!
healthunlocked.com/cllsuppo...
I'm continually adding to it and others are welcome to include their tips too.
Nick and I do take your privacy very seriously and all members are informed of the site's privacy policy in the welcome email that they receive when joining. Here's the policy again; it is worth re-reading to refresh your understanding:
healthunlocked.com/policies...
You'll note that the section Who can see the blogs and questions I write? clearly outlines how site content can be restricted to just this community or shared on the Web.
There's a link to this site's privacy policy at the bottom of every HU website page.
Incidentally, there's a restriction on the welcome email length; we've used all but one character of our allowance 
.
Neil/Admin
Dick, you are right. So I will sometimes lock and say community only here. Good points.
I just posted about this, and this post came up. Bump.
10,000 people seeing my posts is not something I want! You can go back and lock a post.
Pat
New to HealthUnlocked
Patient Power CLL & Fatigue 2022-10-19.
UK Zoom meeting - COVID-19 and shielding update for UK CLL Patients
