HU are Making Some Changes to Closed Posts

HU are Making Some Changes to Closed Posts

HU have some news......

Over the last couple of months, many asked us how to increase the visibility of their community to reach more individuals. Our recent member survey revealed that new members typically join because they found that they could see the answers to their questions on HealthUnlocked. With that in mind, over the next few days we're releasing an improvement to how questions and posts in your community can be seen. It’s important to note though that as protecting members is a priority, we strictly regulate access to content and are doing this very carefully.

Before publishing a post or question we ask members whether they would like for it to be viewable by Everyone or by Members of this community only.

* 'Everyone' means that the post/question along with the replies can be seen by both members of that community as well as visitors (whether they are HealthUnlocked members or not).

* 'Members of this community only' means that the visibility of the post/question is strictly limited to just the title and the first 247 characters for anyone who is just a visitor (whether they are HealthUnlocked members or not) while only members of the community can see the full post/question and replies.

In both instances the post/question can be found through RSS feeds, on for example the websites of your charity and the NHS, as well as through search engines like Google. In the case of the latter though, its visibility is strictly limited so that visitors can understand the gist of that conversation without compromising the author’s privacy. This helps individuals who are not yet members also find answers to their questions and join your community.

While bringing you more visitors and members by increasing your community’s visibility is a priority, we also take the privacy of members very seriously, which is why we limit what can be seen when someone labels their post/question as for Members of this community only.

As part of this improvement we’re blurring out anything beyond the first 247 characters and hiding the author’s username. Additionally we’re adding a question mark icon near the question “Who can view this post?” that anyone can click on to see an explanation of who can view their post or question.

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  • Dont like the 247 characters thing. IMO if someone has ticked the available to memebers only box then thats exactly what it should be, not half of it is available to be viewed and therefore searchable!

    I think I shall email health unlocked and tell them I m not happy with this. I post my posts with viewing limited on purpose.

  • I tend to agree with susymac. In some instances we may well need to reword our posts so as to not give too much away.

  • Not sure this can be described as an improvement. Agree with susymac. I may go elsewhere where I can be confident about closed posts.

  • I have some sympathy with the change. For example it would have been a great help to us if googling a list of symptoms (if such a thing had been available back then!) to be directed to a thyroid site. We had no idea there were 2 people with a thyroid problem in our house for many years. It has always been a huge worry to me - i.e. the number of folks out there with a thyroid problem who are getting fobbed off by their doctors. I'm afraid I differ from the others above. I really don't care if anything I say is open for all to see - it might just reach someone who needs that information. Jane x

  • Yes I think the same Jane. The thought of all those people who have no idea where to turn makes me so angry.

  • Have to agree with Jane, as I think all questions and answers help other folk, and isn't that why we are on this site - to learn and give information if we can. Also believe in being honest and open with questions and answers as this isn't what we get from NHS. Janet.

  • PS - also feel more people might join TUK this way. Janet.

  • It would concern me if posts relating to complaints against the NHS, ie Endocronologists, GPs etc., were available for all to see. I think we need a degree of anonymity, as much as one can on the web, as it's always possible that we could potentially be identified.

    I do however understand and respect Jane's views, that is very much the positive aspect of this new function.

  • My view may be different to that of others.

    Anything you post anywhere on the internet could end up available to the whole world. There is nothing that can stop members copying or quoting your posts/questions/responses anywhere. Indeed, they might do this in complete innocence.

    Anyone can sign up to HU. Having done so they would have access to your posts/questions/responses. It is entirely possible that some GPs, consultants, other health workers, managers, etc., are members.

    It is, therefore, sensible to restrict personally identifying information - your real name, your address, your email address, your phone number. It is also sensible to avoid saying things which could get others into trouble, could be regarded as libellous, or in any other way is not wholly compatible with your and their privacy and public communication.

    My first bit of advice to anyone signing up would be to choose a user name that is not based on your real name! I'd hope HU say this on the sign-up pages - but I never see them so don't know.

    Rod

  • I shall add to my reply above from the HU terms and conditions:

    Any content published in a HealthUnlocked community can be read, used, reproduced, and cited by other members of HealthUnlocked, but you always maintain the option of deleting any content you have submitted at anytime.

  • Just wondering whether it would make sense to have a different user name for every forum used?

  • If I were concerned, that is exactly what I would do. However, I only have very slight involvement in other forums within HU. On entirely other sites, I tend to have a different user name for every single one of them. Becomes quite an overhead keeping track of lots of user names and passwords, but somehow I do seem to manage it most of the time!

    I use a product called LastPass to securely encrypt and store my site details for many of them - it even generates complex passwords. There are other similar products.

    Rod

  • Life suddenly becomes very complicated with different user names! Seem to have lost my Guardian user name and password which is annoying, pretty sure that it's different to this one.

    Of course one of the key symptoms of having a thyroid disorder is brain fog as we all know only too well.

    Presumably you need a good reason to change your user name on HU? Any idea Rod?

  • Hi Cinnamon_girl, You can change your HU username if you want to, and I don't think you need to justify doing so at all.

    Here's a link to the HU info on changing username:

    support.healthunlocked.com/...

    and here's a link to the form to request the change. Simply choose 'Update Username' from the Category drop down list and fill in the relevant info.

    support.healthunlocked.com/...

  • Thank you for the helpful info RedApple.

  • I was so poorly when I joined, and got so frustrated trying to find a name that wasn't already used, that i used a friend's name to base it on! It's not identifiable to them, but I would like to change it now my brain is functioning a bit better! It might confuse everyone though :-\

  • A lot of people look at the pic - rather than the name anyway.... Might be ok! :) xx

  • You seem extremely computer savy, unlike may of us hypo brain fogged users on here, :-/

  • Hi Rod, Does this also apply to PMs ?

    "Anything you post anywhere on the internet could end up available to the whole world. There is nothing that can stop members copying or quoting your posts/questions/responses anywhere. Indeed, they might do this in complete innocence."

    I may be in the wood but sometimes I like to hide behind a tree, making it more difficult to be found, or to dodge a bullet

    Please also see my response to this post below

    FF x

  • Hi

    Private Messages are supposed to be just that - private.

    People do NOT have inherently have permission to use the content of messages - this doesn't mean that they won't - either intentionally or innocently.

    But surely this is true of FB messages/emails/texts..?

    Messages will NOT be available via search engine..

    L

    x

  • I do hope your right. xx

  • I used the word "post" to cover questions, posts and replies/responses. Private Messages are very different.

    HU have repeatedly stated that PMs are private and, with exceptions for technicalities (technicians might see things simply because they have to do their work) and the extreme cases of investigating reported abuse or similar, they will remain private.

    We always have to remember that the legitimate receiver is always in a position to pass on the content of anything they receive. That potentially includes people looking over the shoulder of the legitimate user or using the computer.

    We also have to be aware that anything that passes through the internet has the potential for being picked up by security services or by malware on computers..

    At the end of it all, I believe that PMs are intended to be private and that no-one will be accessing them in the normal run of events. Certainly I have said things in PMs that I wouldn't wish to be made public but am satisfied that it simply is not going to happen in the majority of cases.

    Rod

  • thanks for making that clearer for me rod

  • With regard to comments made by Janeb and HarryE,this is how I found HU. I googled a quesstion that matched someone on here.

    So not sure how I feel about this as Rod says,we're out there already.

  • I don't understand the need to restrict some posts to members. Isn't one's user name sufficient anonymity? I welcome anything which makes it easy for undiagnosed and newly diagnosed to find the site and get help.

  • It doesn't do so if people fall into the trap of signing up with their real names.

  • Bugger! I do wish someone had warned me ;)

  • my own personal view on this subject is .... I would only post or reply on something that I would be happy to share with whoever , and reply on facts as I know them [ unless I state that it was my personal opinion ] ....and I could quantify whatever I state ......if I were not happy for this I would NEVER put into print or say anything that could , at some time ' come back and bit me on the bum' ---- with regard to the access to the posts etc. but for the help that I have gained from this site my knowledge of thyroid issues would still be in the dark ages and my lady wouldn't know what tunnel she was in let alone out of it .....and WE are and will remain forever grateful for ALL THE HELP THAT HAS BEEN FREELY GIVEN .......alan

  • Alan - we're not functioning properly and that's why we're here!! It's not just our bodies that are affected, our heads can be all over the place too.

  • exactly my point cinnamon girl , ---- if you want to restrict your posts etc. YOU , I AND ALL need to be aware before posting ---- but not to restrict others that may already be trying to gain the knowledge and experiences and advice from the good people on this site that have helped not only myself but many many others ........for my own example I was using this site for about 8-10 months before I found out how to become a member [ and how to do it ] ..... I feel that the proof was in the pudding and will be forever in debt to those that helped at that time ......if I were told that I had to subscribe before being allowed to access I WOULD HAVE RUN A MILE AWAY at the start ......alan xx

  • ....................................................................................................................................................................................................................................................................................................................................................................................................................................Is that 247 characters yet ?

    Some posts I leave visible as I know it helps people find us, BUT others I deliberately hide as I know that somethings I say, if read by certain people, it would be obvious it was me.

    I think we should have the choice.

    Also changing ones name or profile pic just changes that, nothing else, and on every one of your posts/questions going back to the first one you ever did, so I will have to go back through all of my private posts and count 247 characters to see if there is anything I don't want to show, that or close my account and start again.

    I sometimes think of this site as a counseling session, and would expect having told you my most intimate thoughts that these would be kept my hidden. After all I wouldn't want my brother to know about all the ins and out of my menstruation, and I'm sure he wouldn't either. ! ! !

  • Hi Flatfeet - I'm pretty sure that this is not being done retrospectively - but I will check for you...

    I'm not sure how this relates to comments on threads, rather than the initial post itself..........

    hmmmmmm......

    L

    x

  • Thanks Louise

  • I will get back to you once I have heard from HU.. Bear with, this will definitely not be over the weekend...... ;) x

  • OK thanks xx

  • Sorry to say that this has been retro-fitted...

    The 247 character rule will be in place for all private posts previously posted and those posted going forward. The important thing though is that a member’s username and profile image will not be viewable unless the person viewing the content is member of HealthUnlocked AND the community.

  • Thanks for letting me know. Is this in place now Louise ?

  • It is...xx

  • I sometimes think this site is getting to big for its boots.

  • ;-) !

  • Is this why Louise warvill has joined Great British Thyroid. ???

  • HUH!? I'm afraid I don't understand! :( As I mentioned on the group - I like to join thyroid groups to keep my ear to the ground - by which I meant, I might pick up on thyroid news that hasn't been mentioned elsewhere - such as a shortage of meds, or a new Endo for the list, or a previously un-discussed symptom.....

    I have no idea why me joining a FB group - with my personal FB account - would have any bearing on HU policy! :(

    When I went to bed last night - everyone on the group seemed ok with me being there - I will check to see if that has changed and will act accordingly.

    Louise

  • Dear Louise,I have no objection to you joining GBT. It did seem coincidental that it came at the same time as you announced changes to this site. I hope with you having a foot in each camp that it will indeed prove fruitful. But please remember that some people might have things they would like to private to one group or the other and not share. xxx

  • I trust Louise enough to be sure that she is aware of that. And HU is not run by Louise, she was simply passing on information.

  • Yes Harry, I do agree just concerned about privacy.xx

  • I know, and I understand why, but in reality all of the admin team could be on that group and you wouldn't know, because they use usernames here. No one is here try and make trouble for anyone else, in my opinion anyway :-)

  • I know and agree Harry,but it has definitely made me more aware and thus more cautious what I say. So be it. :)

  • Simply a coincidence. I am also on Thyroid Friends on FB and a number of other groups I can't remember the name of.

    I don't discuss anyone's private business with anyone else, and I'm a little hurt that anyone would think that I would. :(

    I also don't consider it having a foot in each camp as we are all on the same side, surely........

  • Hi how do you delete a post or question? Thankyou

  • If you look at the bottom of the post concerned there is an Edit option. To the right of the word Edit there is a small downward arrow. Click that and the word Delete appears. Click on that, confirm that you are sure, and the post is gone.

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