Given that lately more members are including their email addresses in their submissions, I thought I'd explain why this community's admins will delete your email addresses when you post them. Basically it's for your safety!
Each post to this community is either visible to everyone on the internet (the default) or when there's a padlock icon present to the right of the title, to just the followers of this community (i.e. 3,100+ members).
It is very unwise to enter your email address on any internet forum. That's because there are automated programs (called robots) that search out email addresses for sale to email spammers. (Email addresses are easy to spot - the robot just looks for any text of the form username@website.com.)
A few years back I was shocked to see that a corporate email spam filter delivered under 10% of the emails received - the rest were spam/junk emails! Your email provider likewise filters your email so you only see a small percentage of the junk emails addressed to you - those emails that the filtering program isn't quite certain about. New and cleverly written spam still gets through and then you are at risk of having your computer infected by malware.
A new form of malware is becoming far more dangerous and far reaching in its ability to hurt you badly. It's called ransomware and the latest versions silently work through your computer, encrypting your personal files before finally asking you to pay several hundred dollars for the secret password to restore your files. The newer versions seek out any back-up drives connected to your computer and even your cloud storage files, so you really don't want share your email address world wide!
You may think that you'd be safe including your email address in a locked post, but that's not the case if you mention your email within a couple of sentences of your post. While your username is hidden, the first few lines of your post are still searchable via Google, Bing, Yahoo, etc, and if your email address is there, it can be captured for abuse.
For more on how you can protect yourself online, please read our community's posting guidelines and security tips: healthunlocked.com/cllsuppo...
Thanks for this reminder, Neil. It's sad reality that we have to be very careful with our use of email addresses.
I was also surprised to see that the two options for "Who can see my post" are either "Everyone" or "Only Followers in my community"
I think this is confusing... It suggests that by clicking "Only Followers in my community" we are only sharing our post with people who are our own personal "followers". I'd have thought it would be better if it said "Only members of this community".
And by saying "Everyone", it suggests that by clicking this, our post is viewable by everyone in the community (as opposed to just our "followers"). I'd have thought it better to say "Everyone on the internet".
I realise this wasn't your choice of wording, Neil. Maybe I'd be better addressing this to HU people. But perhaps its just me who sees this as a problem... What do others think?
I think it still continues to confuse Paula and I agree that the wording is misleading especially to new people to the site.
It never ceases to amaze me how many people still post clearly identifiable posts with photographs and names but seem unaware that this could be going onto the Internet to be accessed by people they'd really rather not know about their CLL. It also makes some members inhibited about replying
I have maintained from day one, that it should default to 'Community Only', it is still on the internet and Google searchable, so while the entire post is not readable to the entire world and parts on the Andomeda nebula, the first part of a post certainly is, as well...pictures are viewable, I believe...
It's a doddle to change in the code Sue, as the coder/maintainer. It would be easy for HU to even have it set via communtiy which would need a little more work. My view is that HU just have to get the request and have the will to do it.
They should have a 'global toggle' for each of the various sites on HU, so the admins could decide to have a group function as a closed or open community... Facebook does that on three levels... very easy to impliment...
The issue is not whether the code change could be done, it's that the basic philosophy of HealthUnlocked, implicit in the site's name, is for content to be open/unlocked. HU's fundamental business plan is to use the valuable searchable content provided by knowledgeable community members to attract new members to the site via Internet Searches.
Around 18 months ago, our community discussed this issue at length, which was moot in any case, because HU do not want to introduce locked content - despite some communities being prepared to pay for a premium service with the default changed. (Even in the HU Admin community we have to ensure all posts are locked.) Some CLLSupport members called for the default post setting to be for locked posts with a few recommending we go to a closed community supported by membership donations. The administrators (Nick and me) were well aware of how effective the HU business model was in enabling traumatised newly diagnosed CLL patients to find us, but we didn't have any hard evidence. I began collecting the membership statistics of CLL forums each month to prove the point and the results conclusively show that the open community philosophy works extremely well.
We were the fifth largest CLL support community back then - now we are the second largest with an absolute growth nearly double that of the largest forum. We are about equally active to the largest group with around 40% of our community actively involved each month. (Other communities don't provide activity stats.) Percentage wise, the largest group grew 13.6% in 18 months; we grew 122%.
Absolute membership increases per forum for the last 18 months are as follows, with this community's growth first:
1670
_875
_202
_138
__42
__35
When you have a chronic illness that impacts your ability to accomplish tasks, you quickly learn to focus your efforts where you can be productive and NOT waste your efforts engaging in activities that have a limited chance of success. The admins and volunteers recognised we couldn't change HU's business model, so we directed our efforts into ensuring each member was informed on joining about their posts being open (it's covered in the welcome email and in the pinned post I referenced above), and by reinforcing this when new members inadvertently disclosed personal information. That approach seems to be working well with new members nearly always selecting to lock their post if they are disclosing personal information and other members bringing unlocked posts to the poster and/or admin's attention. Brian's latest blog mentions the challenges involved in running chronic illness community support forum and is well worth reading:
We've build a vibrant and supportive community which I personally think achieves a healthy balance between keeping personal content private while being readily findable for those newly diagnosed. Nick and I welcome suggestions from any member to consider making posts private and generally do so fairly promptly. PaulaS has raised concerns about the adequacy of HU's help text which others on the HU Admin have also raised, so we'll feed this back to HU. Hopefully HU will improve the warnings, but we know from experience that there will still be the occasional submissions that should be made private. So please don't hesitate to flag any submissions where you think the author inadvertently overlooked the privacy issue. You can now use the @ in front of the poster's username to call the submission to their attention in addition to the mail notification they should get and you can also use the same technique to bring the submission to Nick HAIRBEAR_UK or my AussieNeil attention.
Thanks for this reply, Neil. I remember the discussion on some of these issues a year or so ago. And I do understand HU's business model (well sort of). It was the confusing/possibly misleading way that HU expressed the choices re who can see our posts, that struck me as being in need of improvement... So thank you for feeding this back to HU. As Rob has said, it's part of the bigger issue of how HU express their help text.
But it's amazing to hear how our community has grown so much... I think we must be doing something right!
You make a very good point Neil, regarding the self-explaining title. My (again personal) opinion is that with things being private there will potentially be less visibility of the discussions to newbies, those most likely to be desperately looking for help. I'm not aware of intentionally making any of my posts private and that will be how I plan to stay for the forseeable future. There is no wrong answer on this, some prefer more privacy for whatever personal reason.
Help is a tough one. Generally, writing good help text is hard as it needs to be simple, concise and unambiguous.
Simple: for those whose first language might not be English
Concise: to keep clear and unconfusing and avoiding boredom
Unambiguous: to avoid wrong conclusions from the help itself.
I agree there needs work on some of the HU help text - IT guys are not the best at it (I speak from 1st hand involvement).
It will be good to see the HU help improved, however I think it will not be an 'overnight job'.
(My previous comments on the private/public default setting were purely related to the process of coding, not to what it should be).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
