LUpus Patients Understanding and Support
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Online security starts with you

In this community, we discuss very personal information and (rightly so), some of us do not want that information circulated outside of this trusted community. Here are some tips to help you retain control of your what you share.

1) Thoughtfully choose your username

Unless you want people to recognise your postings on other forums, do not use the same or a similar username across different sites.

Likewise consider very carefully whether your profile picture should be of you, particularly if you are working.

2) Choose a unique and strong password for each site where you must register

Don't use a dictionary word, but something with a mix of all the characters available on your keyboard - the longer the better. (To simplify things, you might opt to use a common and simple password for sites where there is nothing worth protecting.) There are plenty of good tips on how to create and remember a strong password on the net.

Remembering all those unique passwords is beyond us - particularly when coping with CLL fatigue, not to mention the stress and illnesses that can accompany it. Your browser most likely offers you the feature of remembering all your passwords and you can go to the extra step of setting one browser password to control access to these. Consider using this or a password wallet, particularly if your means of access to the internet is shared. There are good, free wallet programs available, but be aware that you are 'putting all your eggs in one basket'.

Change your password every few months if you are really concerned about privacy breaches. Well known companies have had account information stolen and even encrypted passwords can eventually be broken.

You can change your password here (next to last option) :

3) Think about the security of where you log in to this site

Do you use a shared device? Are all the applications used on it patched to fix known security bugs? Does it have a reliable malware scanner installed and up to date? No operating system/application is totally secure, some are just more secure than others some of the time.

4) Understand and become familiar with the security features of this site

Whenever you submit a question or post, carefully consider whether you want it private to this community and set "Who is this post for?" accordingly. If you accept the default setting of 'Everyone' then everyone will be able to find your post/question, both by searching on this site (when Search works) or via their favourite search engine. [Time for an honest answer, how many of you found this site via a specific search on a CLL issue using Bing, Google, Yahoo, etc, found a good answer to your question and then joined?]

Note that the title and early text of private posts are still visible to search engines, but not the UserID of the poster.

Posts/Questions set viewable by 'Only followers in my community (Hidden post)' can only be changed by the original poster or admins. All replies inherit the viewable setting of your submission and hence are under your control, so anything set to viewable by 'Only followers in my community (Hidden post)' that has had replies added by others should never be changed back to 'Everyone'.

Private Messages cannot be viewed by HealthUnlocked employees unless they are included in 'People in this conversation'.

5) Understand how what you submit can be used by HealthUnlocked

Review the Privacy Statement. Read the whole thing through - TWICE. It's at the bottom of every page:

Note in particular: "If there is anything which you are not comfortable sharing with the HealthUnlocked community, you should not include it in your posts, questions, comments, or answers."

6) Carefully consider what is in your profile and what is public

Your profile is a double edged sword; more detail helps others help you, but also releases information you may wish to keep private. You can set individual fields to private or leave them shared.

7) Check what information is included in your posted picture!

This may be getting a bit paranoid, but my new camera comes with a GPS function and if I enable that, GPS coordinates are included with each picture showing where and when I took it. I either keep the GPS function turned off or use ExifTool (freely available for Linux, Mac and Windows) to strip this information out before posting any pictures on line. What does your phone/camera include in the EXIF information saved within an image?

8) Locking your posts; making them private to this community

If in light of the above, you want to make your previous posts private, just click on your username above any content you've provided. (Alternatively, enter the address (username) in your browser address bar.) You'll be taken to a page where you can see all your site activity by clicking on the Post and Reply tabs. Click on the Post tab and edit each post you've submitted that you want to make private/locked. (The Edit option is available by clicking on the 'v' to the right of the 'Like' under your post.) You can then change the setting to 'Who can see my post?' from the default 'Everyone' to 'Only followers in my community (Hidden post)'. Take the opportunity to clean up the tags while you are at it. Click on the Post button at the end of your submission to save and post your changes.

Since you are only able to make your own posts private, if you have divulged private information in a reply to someone else's post, you can either edit your reply, or if you prefer, PM the posts owner or an admin and ask them to make the post (and all replies) private.