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[Mike d]

Never make your life so complicated that you can't find your way out of your own maze

 

[Mr_Pot]

I don't see what difference it would make if only registered members could view the forum, anyone could register under a false identity to get round that. Not using your own name or photograph and not giving any clues to your identity seems to cover privacy issues unless DCUK were to leak your email address.

 

[Member496333]

Requiring registration - provided that measures were in place for doing so - might prevent bots from searching the forums and gathering data? But that is probably a bridge too far in terms of online paranoia.

 

[LittleGreyCat]

As a fairly long term member, I have seen this issue surface before.

People can be quite naive about posting information on an open forum, even when they have found the forum using a search engine and then read some posts before deciding to sign up.
I assume the emotional need to be amongst a group of supportive friends may understandably make this feel like a private club when it is completely open to all of the Internet.
However, feeling that it ought to be private and getting indignant at the site owners (seen this before) is closing the stable door.

On the subject of Facebook (and Twitter for that matter) if the post is already freely visible by the whole of the Internet there seems little point in singling out one platform to complain about. However this is my logical approach, not an emotional one to a specific platform.
In fact I wonder if there is any legal reason that a post here couldn't be copied in whole or in part and posted on another site. I think Facebook only allows posts to be used within Facebook but I could be wrong.
Hopefully some kind of statement about ownership of content by the site, but it would be a nightmare to police.

Anyway, as people are unaware (or have forgotten) that this site is entirely public, the information might need making more prominent.

On the general topic of the site being searchable and readable I am strongly in favour.
I like to think of the site as a public resource to provide information and support, not a closed shop.
Limiting the number of site visits before you have to sign up would encourage me to look elsewhere as I can react badly to perceived coercion.

 

[zand]

OK, so here's the original thread where some of us discovered our posts had been placed on Facebook. It was a very uncomfortable time for the OP and others of us too.

https://www.diabetes.co.uk/forum/threads/forum-posts-on-facebook.70850/

I share on this site because it is a support forum with moderators who are here to intervene and stop any bullying. I am not sure the same rules apply to Facebook which often seems to thrive on folk picking on a particular person. That's the difference between sharing here where info is openly available and sharing on Facebook.

 

[woollygal]

OK, so here's the original thread where some of us discovered our posts had been placed on Facebook. It was a very uncomfortable time for the OP and others of us too.

https://www.diabetes.co.uk/forum/threads/forum-posts-on-facebook.70850/

I share on this site because it is a support forum with moderators who are here to intervene and stop any bullying. I am not sure the same rules apply to Facebook which often seems to thrive on folk picking on a particular person. That's the difference between sharing here where info is openly available and sharing on Facebook.

So those posts that duck post that are questions from the public, are they taken from here. I thought they were fac book users who messaged them.
So any of the questions asked on here could be taken and posted on Facebook?

 

[There is no Spoon]

Is That level of interrogation entirely necessary or useful to those non members seeking help ?

Yes.

A message for everyone on here members and non members, all are welcome.
Ever member was once a non member.

You specifically ask is it appropriate that a guest can search these forums for the information that might save there lives then the answer is yes. When your new and looking for information from people you can trust yes transparency is necessary and useful.

The exact opposite is also true if you need information to save you life but we will only give it to you if you join us, inspires no confidence. People join and ask us for help and advice and the advice we give them is almost entirely contradictory to public perception of what is good for them and often goes against the current government and medical advice for our condition.

Why should they believe us or take our word for it if it wasn't for the openness this site offers for people to look around and see that we practice what we preach. We are not snake oil sales men, and women (# equality women can be liars too), trying to prophet of there misery we are them. We understand. We were them. Lost and alone looking for help.

When your new you see the avatars with things like Expert & Guru sounds impressive but what does that mean? You have posted a lot and that earns you a title. Posting a lot and knowing what your talking about are 2 entirely different things. You can look up someones posts and see if they make sense. It all goes towards building a level of trust.

That trust is important.

 

[Goonergal]

Similar to @Rachox I joined with a username that doesn’t divulge my identity and initially used avatars that were anonymous. Once my story was published in national newspapers and referenced in posts here (by newsbot and other members) I was happy to use my photograph. However, I am very careful with the type of information I share - nothing that could directly identify exactly where I live, nothing that might upset or identify family or friends and nothing that identifies work colleagues or issues.

Given that information here is publicly searchable, I have no issue with it potentially showing up on Facebook.

If a member here chooses to use an anonymous avatar and does not disclose their name in their username, then the sharing of information via Facebook will not present any risk of identification.

 

[woollygal]

I understand nothing is private on the internet. But this is my place to say how I feel. There is nowhere else because no one else really understands how it feels.
So while I understand people need to see posts to understand what goes on, I do feel like the more private areas and personal already of the forum could be kept shut,

The less public areas could be open.

But as well as it being important for thos not yet here there needs to be an element that those of us already here are important. And this is a support network but how can we fully get the support we need if we have to potentially hold back on details just in case someone lurking can see it.

I really can’t remember looking at the forum when I joined, I don’t think I did, I don’t even think I knew there was one. I was just joking in things to do with diabetes for help. I think once I joined I then found out about the forum. As for reading terms and conditions, I don’t think I could decipher that much detail back then either.

 

[Listlad]

Hope you haven’t stopped posting @jjraak !

 

[Deleted member 308541]

I have noticed one poster in this thread has changed their username and avatar...

 

[jjraak]

Just taking time Pondering the idea that ANYONE can search through all my posts and read everything I have ever written on here, and gaining that access is all made So easy by simply popping my username up in any search on here.

I get the idea of letting people search some of the forum,
And i accept letting some browse the forum to search for a given topic, however I do take issue with how it facilitates a full search of any individuals account, that seems a misstep to me.

I just Can't balance the needs of those searching for help..(I did) with the idea EVERYTHING we write is just so easily searchable by members name.

Not sure i get just how "vital" that aspect is.
Cant think of a moment where when I was seeking help the absolute need to search any one individuals full post history, would have hurt my need for advise.

Isn't that why we name each thread..?

I think I'll curtail my activity until I can go back over many posts and check how confident and comfortable I feel with EVERY word I write being so open to anyone who just happens to pass on by or it being transfered wholesale to Facebook.

Spent some of the day reading up on the Facebook issues.

I do not use Facebook, so the idea most of my post may have been posted on there without me getting any acknowledgment is something I will take on board over the next few weeks.


Take care, @Listlad.

 

[EllieM]

Isn't that why we name each thread..?

I often search members' posts to see what type of diabetes they have, or what treatment they are on, or just how long they have been a diabetic, as those factors make a big difference to my advice. Don't worry, I haven't had any reason to search yours .
But I understand your concern, though I personally am not too concerned about that issue. (It's not as though it's hard to register, spammers manage it often enough.)

 

[jjraak]

Yes.

A message for everyone on here members and non members, all are welcome.
Ever member was once a non member.

You specifically ask is it appropriate that a guest can search these forums for the information that might save there lives then the answer is yes. When your new and looking for information from people you can trust yes transparency is necessary and useful.

The exact opposite is also true if you need information to save you life but we will only give it to you if you join us, inspires no confidence. People join and ask us for help and advice and the advice we give them is almost entirely contradictory to public perception of what is good for them and often goes against the current government and medical advice for our condition.

Why should they believe us or take our word for it if it wasn't for the openness this site offers for people to look around and see that we practice what we preach. We are not snake oil sales men, and women (# equality women can be liars too), trying to prophet of there misery we are them. We understand. We were them. Lost and alone looking for help.

When your new you see the avatars with things like Expert & Guru sounds impressive but what does that mean? You have posted a lot and that earns you a title. Posting a lot and knowing what your talking about are 2 entirely different things. You can look up someones posts and see if they make sense. It all goes towards building a level of trust.

That trust is important.

I doubt we are the 5th emergency service, @There is no Spoon.

999 is what's the best idea in cases of emergency.

However I do take the point many will come on here looking for advise that might be life changing.

( Followed one or two posts where the symptoms persuaded me to suggest, along with many others I might add, that they go to hospital asap.

Just not sure why any one needs to search ALL MY posts before doing so.?


Balance that up now, if you will, by that information perhaps NOT being so readily visible.. Isn't that what the people you speak of will be doing, looking at posts fur information ?

If those of us on here actually posting, now feel reluctant to divulge too much information due to a not undeserved issue with OUR privacy...?

Balance it up, one does not benefit if the other is cowed into posting only the most basic of information due to those privacy concerns.

Surely THAT benefits no one.?

 

[Deleted member 308541]

Just not sure why any one needs to search ALL MY posts before doing so.?

The search engine bots have been crawling this forum for years, and have most probably have indexed every post for info, both yours and mine and everybody else as well.

 

[jjraak]

I often search members' posts to see what type of diabetes they have, or what treatment they are on, or just how long they have been a diabetic, as those factors make a big difference to my advice. Don't worry, I haven't had any reason to search yours .
But I understand your concern, though I personally am not too concerned about that issue. (It's not as though it's hard to register, spammers manage it often enough.)

@EllieM .. Cheers for the concern and respecting my privacy..lol

I'll take a moment to balance what I do moving forward.

A rifle through my old posts and a rethink in future of what I trust can be posted on here, and I'm good to go again

Would hate to leave the forum.
I found a home and friendship I think after a lonely & dark few weeks just after DX.

Just like at home, where I may have thought I could leave the door on the latch amongst friends, it's now just a case of buying a few sturdy locks, some bars for the windows and maybe a nice fluffy alsatian or rottie... And a calm sense of security will return, sad but it is what it is.

Take care.

 

[jjraak]

OK, so here's the original thread where some of us discovered our posts had been placed on Facebook. It was a very uncomfortable time for the OP and others of us too.

https://www.diabetes.co.uk/forum/threads/forum-posts-on-facebook.70850/

I share on this site because it is a support forum with moderators who are here to intervene and stop any bullying. I am not sure the same rules apply to Facebook which often seems to thrive on folk picking on a particular person. That's the difference between sharing here where info is openly available and sharing on Facebook.

Horrified at what you posted @zand
What a breach of trust
But hey ho, we live and learn to be a little less open.

Thank you for posting, what an eye opener

Take care.

 

[Pipp]

OK, so here's the original thread where some of us discovered our posts had been placed on Facebook. It was a very uncomfortable time for the OP and others of us too.

https://www.diabetes.co.uk/forum/threads/forum-posts-on-facebook.70850/

I share on this site because it is a support forum with moderators who are here to intervene and stop any bullying. I am not sure the same rules apply to Facebook which often seems to thrive on folk picking on a particular person. That's the difference between sharing here where info is openly available and sharing on Facebook.

I contributed to that thread. It was at a time when I felt particularly vulnerable, and had been alerted to a particularly unpleasant post about me on another forum by someone who had read my posts in DCUK. I have moved on since then, and DCUK has also evolved somewhat. The Facebook revelation emphasised to me something I already knew, that we leave footprints in our postings that can be seldom be erased. It is all too easy to become comfortable with the familiarity that grows through communications with members who often become to be thought of as friends. It served as a reminder to be cautious in what I reveal about myself, as there is stuff I wouldn’t want to share with the whole world.
That makes facebook and other social media irrelevant to me. If I don’t access them I don’t see ifanything I post here, or elsewhere is being misused or ridiculed.
I do believe this forum is best as an open forum. I would never have found it if it wasn’t.

 

[Robbity]

I've always worked on the basis that anything that I post on the web (unless it were on a site I actually owned and paid for) is not actually owned by me, and so can be treated as public property. Sites such as Facebook where you are asked to provide all sorts of personal information and preferences are goldmines for commercial enterprises seeking to target their sales ploys. Storage type sites that allow you to upload images or data will usually then own that information - not you.

I try to keep the information I post here to what hopefully won't identify me, but I've been happy to be much more open on other forums where I may well post other less personal information

But in general, it often scares me rigid the amount of trust that some people have (maybe in all innocence) and will happily post photos of their young children, or enough detail to identify who and where they are, and information about when they will be going on holiday, for example, which can be an open invitation to burglars.

Robbity
(whose middle name must be paranoid...)

 

[Pipp]

@jjraak I am sorry that you, and others have been upset by finding out that non-members can access your posts.
I have always found your content to be supportive, and friendly. I hope you will continue to post, and thank you for the reminder that this thread has given about being cautious in what we reveal about ourselves.