Forum posts on facebook

Patricia21 · Jan 22, 2015

I also agree with you Kat.
Im on Skype to talk to family abroad,recently I have had a lot of people trying to contact me on Skype who I dont know,I have deleated them,I dont know how they get my Skype account.
Im not blaming the forum,but it could be somthing to do with Face Book.

Administrator · Jan 22, 2015

We’re sorry that sharing forum threads on social media from the Diabetes Forum is concerning members of the diabetes community. I would like to explain how and why this happens.

Diabetes Forum threads are visible to the public. You will see a tweet, like and +1 button at the bottom of every thread. If someone tweets, likes or +1’s a thread; it will appear within their feed on their respective social networks.

By connecting people and engaging, the health of Diabetes Forum members is improving. From a survey conducted in November 2013, 73% of forum members state that they improved their understanding of diabetes as a result of using the Diabetes Forum, 44% of members said they had improved their blood glucose control and 55% of forum members said they had improved their diet choices.

The stats sound great, but the question remains - why does this happen? Well, quite simply, because connecting and talking to each other is affecting people’s choices, thinking, and ultimately health outcomes. There are genuine benefits for sharing. This is a community of people with diabetes, their friends, family and carers. There is over 950,000 years’ worth of cumulative experience within this diabetes community. It’s self-propagating – the community is helping the community, through sharing – whether that’s through questions, experiences or support.

The success stories speak for themselves – sharing works. People often cite the Diabetes Forum community as pivotal to their success. This reinforces the benefits of sharing. The community is affecting health outcomes. People are improving their health and this is something that is (firstly) fantastic and (secondly) should (and arguably, needs) be shared.

The Diabetes Forum is not just helping people, it’s affecting scientific research and understanding. A prime example is Low carbohydrate diet to achieve weight loss and improve HbA1c in type 2 diabetes and pre-diabetes: experience from one general practice where the Diabetes Forum is cited as being popular in highlighting the adoption of a low carbohydrate diet as a way of achieving weight loss and improving HbA1c in patients, despite the approach being 'generally frowned upon in the UK'. It’s taken almost a decade for low-carb to be accepted as a valid approach to diet for people with diabetes – and it is the postings, comments and threads from the Diabetes Forum that has influenced, and is continuing to influence policy. This is only possible if we’re able to openly share and engage.

Select threads are shared on Facebook. The motivation is simple: for others to engage and understand that they are (firstly) not alone and (secondly) that they can find support, ask questions and share their experiences with the community here on the Diabetes Forum. Ultimately, reading threads, taking part by posting or voting and sharing with other members of the Diabetes Forum is having a positive effect on peoples’ health – and that’s why we share.

To clarify, only members of Diabetes.co.uk’s Facebook page are able to see the posts that are made. Whether forum threads are posted and a number of Diabetes.co.uk Facebook members will join a topic after having seen it on Facebook. Similarly, a concurrent discussion may also take place on Facebook.

We began posting select threads on Facebook after members of the Diabetes.co.uk Facebook page started posting forum threads they had read through the Diabetes Forum App to the Diabetes.co.uk Facebook page, asking others for their opinion. We share a range of posts on Facebook – on diet, lifestyle, medication… everything. Forum posts make up a minority of posts, however are absolutely fundamental to our objective of improving peoples’ health. And it’s working. We, perhaps naively, failed to realise this would be of a concern to members of the Diabetes Forum.

Ultimately, sharing and engaging is why this community is changing health - at both a personal and policy level.

dannyw · Jan 22, 2015

Thanks Admin. To be honest, it would have been good to know this sooner but I can understand your reasoning. Maybe some members may be a little more careful what and how much they share here in future. This is a great forum but we need to be able to trust it.

Andy12345 · Jan 22, 2015

In other words.... Like it or lump it

Administrator · Jan 22, 2015

Patricia21 said:
I also agree with you Kat.
Im on Skype to talk to family abroad,recently I have had a lot of people trying to contact me on Skype who I dont know,I have deleated them,I dont know how they get my Skype account.
Im not blaming the forum,but it could be somthing to do with Face Book.

Hi @Patricia21 - it is very unlikely that is due to the forum. Posts are publicly visible however member details are 100% only visible to members of the forum who are logged in.

urbanracer · Jan 22, 2015

dannyw said:
I've just had a quick look and can't see where membership to this forum allows admin to link to FB. Huge breach of trust in my opinion. Permission should have been gained first. Little point in telling members not to post anything personal after the fact. Hope we get an answer soon.

I think you'll find that permission was gained first....................

9.3 Any content you input or upload to our Website will be considered non-confidential and non-proprietary, and we have the right to use, copy, distribute and disclose to third parties any such content for any purpose.

9.5 We have the right to disclose your identity to any third party who is claiming that any content posted or uploaded by you to our Website constitutes a violation of their intellectual property rights, or of their right to privacy.

............the devil as always, is in the detail!

Full text here:-http://www.diabetes.co.uk/disclaimer.html

Administrator · Jan 22, 2015

dannyw said:
Thanks Admin. To be honest, it would have been good to know this sooner but I can understand your reasoning. Maybe some members may be a little more careful what and how much they share here in future. This is a great forum but we need to be able to trust it.

Apologies @dannyw - we never tried to mislead. As said above, we failed to realise this would be of a concern to members of the Diabetes Forum (as posts are and always have been publicly visible).

Robinredbreast · Jan 22, 2015

Administrator said:
We’re sorry that sharing forum threads on social media from the Diabetes Forum is concerning members of the diabetes community. I would like to explain how and why this happens.

Diabetes Forum threads are visible to the public. You will see a tweet, like and +1 button at the bottom of every thread. If someone tweets, likes or +1’s a thread; it will appear within their feed on their respective social networks.

By connecting people and engaging, the health of Diabetes Forum members is improving. From a survey conducted in November 2013, 73% of forum members state that they improved their understanding of diabetes as a result of using the Diabetes Forum, 44% of members said they had improved their blood glucose control and 55% of forum members said they had improved their diet choices.

The stats sound great, but the question remains - why does this happen? Well, quite simply, because connecting and talking to each other is affecting people’s choices, thinking, and ultimately health outcomes. There are genuine benefits for sharing. This is a community of people with diabetes, their friends, family and carers. There is over 950,000 years’ worth of cumulative experience within this diabetes community. It’s self-propagating – the community is helping the community, through sharing – whether that’s through questions, experiences or support.

The success stories speak for themselves – sharing works. People often cite the Diabetes Forum community as pivotal to their success. This reinforces the benefits of sharing. The community is affecting health outcomes. People are improving their health and this is something that is (firstly) fantastic and (secondly) should (and arguably, needs) be shared.

The Diabetes Forum is not just helping people, it’s affecting scientific research and understanding. A prime example is Low carbohydrate diet to achieve weight loss and improve HbA1c in type 2 diabetes and pre-diabetes: experience from one general practice where the Diabetes Forum is cited as being popular in highlighting the adoption of a low carbohydrate diet as a way of achieving weight loss and improving HbA1c in patients, despite the approach being 'generally frowned upon in the UK'. It’s taken almost a decade for low-carb to be accepted as a valid approach to diet for people with diabetes – and it is the postings, comments and threads from the Diabetes Forum that has influenced, and is continuing to influence policy. This is only possible if we’re able to openly share and engage.

Select threads are shared on Facebook. The motivation is simple: for others to engage and understand that they are (firstly) not alone and (secondly) that they can find support, ask questions and share their experiences with the community here on the Diabetes Forum. Ultimately, reading threads, taking part by posting or voting and sharing with other members of the Diabetes Forum is having a positive effect on peoples’ health – and that’s why we share.

To clarify, only members of Diabetes.co.uk’s Facebook page are able to see the posts that are made. Whether forum threads are posted and a number of Diabetes.co.uk Facebook members will join a topic after having seen it on Facebook. Similarly, a concurrent discussion may also take place on Facebook.

We began posting select threads on Facebook after members of the Diabetes.co.uk Facebook page started posting forum threads they had read through the Diabetes Forum App to the Diabetes.co.uk Facebook page, asking others for their opinion. We share a range of posts on Facebook – on diet, lifestyle, medication… everything. Forum posts make up a minority of posts, however are absolutely fundamental to our objective of improving peoples’ health. And it’s working. We, perhaps naively, failed to realise this would be of a concern to members of the Diabetes Forum.

Ultimately, sharing and engaging is why this community is changing health - at both a personal and policy level.

Hello, I mentioned in a post of an accept or a deny button, I'm sure Giverny, the tech wizard could implement something along those lines. Or Admin could possibly start a thread with a yes, accept, or a no, decline poll regarding Facebook. What do think about this, a good idea ?

Many thanks RRB

dannyw · Jan 22, 2015

urbanracer said:
I think you'll find that permission was gained first....................

9.3 Any content you input or upload to our Website will be considered non-confidential and non-proprietary, and we have the right to use, copy, distribute and disclose to third parties any such content for any purpose.

9.5 We have the right to disclose your identity to any third party who is claiming that any content posted or uploaded by you to our Website constitutes a violation of their intellectual property rights, or of their right to privacy.

............the devil as always, is in the detail!

Full text here:-http://www.diabetes.co.uk/disclaimer.html

Lol ! Who reads that

Robinredbreast · Jan 22, 2015

dannyw said:
Lol ! Who reads that

I didn't but I have seen this before, when trying to get onto some link, sorry but I feel it's wrong

ps How can a member email you, I can't see a link anywhere? Could you tell me where it is please.

Many thanks RRB

Lenny3 · Jan 22, 2015

I really dont mind and agree that the more people find this tool the better. I really do think it's made my life longer. I just dont want to be recognised from here on fb. Now i know, i will be sure to not post personal pics or any identifying information.

urbanracer · Jan 22, 2015

dannyw said:
Lol ! Who reads that

Nobody does, but it's no good complaining after the event is it? Just like the start of Hitchhikers Guide to The Galaxy when the Vogons turn up to blast Earth to pieces to make way for a hyperspace bypass. Everyone complained but nobody went to Alpha Centauri to look at the plans did they?

LittleGreyCat · Jan 22, 2015

I'm with @tim2000s on this one.

We are all posting on a public, not private, site.
As such, all postings are in the public domain and there are no privacy or copyright issues.
The site is moderated, but that is to keep the spammers and crazies away not to protect our privacy.

Posting on this site is just like posting on Facebook - there is a permanent record of whatever you post and it is globally visible.

This is a nice friendly forum and has a "family" feel.
Much like Facebook and similar sites, people can lose sight of the fact that everything is public, and imagine that because you have to register then it is private.
We are contributing to a global resource for Diabetics, globally accessible.

So the only possible issue I see is the site owners cross posting content from the web forum to the Facebook page.
It seems a valid strategy to draw people into using this forum by publicising it on Facebook.
It is a common strategy for Social Media sites.
From a quick look at the Facebook site the content is very similar (no surprise) to the news and other information posted on the parent web site to this forum (which also links to popular forum posts).

I must say that I think people are over reacting - it seems illogical to me that when all our content is easily shown by Google, and anyone with a Facebook account can link to any post or thread on this forum, that people are expressing shock, horror and disgust.

So, can I respectfully suggest the following:

(1) The forum owners poll the forum membership to see how many people strongly object to specifically the forum owners posting links on the Facebook sister page to this forum. As far as I know there is no way of preventing anyone else doing this.

(2) If there is a strong feeling by a significant percentage of forum members that this should not happen, then the forum owners should desist and update the Ts&Cs to say they won't. (or accept that they are going to lose some members) If it is a minority only who object then the Ts&Cs should be updated to make very clear that posts on the site may be linked to the sister Facebook page.

(3) The forum owners add some kind of prominent reminder at the top of the forum pages to highlight to everyone that all posts are publicly visible, and can be cross-linked to other web sites including news and Social Media sites.
Never post anything you wouldn't be happy for the whole world to read, especially anything which might reveal your identity if you wish to keep it secret.

Hopefully this will cover the majority of the objections.

Anyone who is not comfortable should cease posting.
Unfortunately everything on the web it archived in many places and so can never be taken back.

This should, perhaps, be a wake up call to all members.
The are no secrets on the Internet!

Cheers

LGC

P.S. Whatever you do, don't mention the Twitter feed!!

urbanracer · Jan 22, 2015

Robinredbreast said:
I didn't but I have seen this before, when trying to get onto some link, sorry but I feel it's wrong

ps How can a member email you, I can't see a link anywhere? Could you tell me where it is please.

Many thanks RRB

Actually Facebook has exactly the same disclaimer. So once diabetes.co.uk post there, FB can do anything they want with the images. The disclaimer must be in place or diabetes.co.uk wouldn't even be able to share my posts with you.

mrman · Jan 22, 2015

dannyw said:
Lol ! Who reads that

urbanracer lol

zand · Jan 22, 2015

@Administrator Well I do not trust Facebook. I do not want my posts shared there. I don't mind that my posts are publicly visible but I still don't want them on FB. But I guess admin and the site owners will do what they want anyway. You failed to realise it was of concern because you didn't ask us! Like RRB I feel this is wrong and would like an 'opt-out' option.

I agree with @LittleGreyCat that this forum feels like a family. Facebook does not. I do not want the site owners publishing any of my content on Facebook. I can't see them changing this policy though, so we all have to think seriously about whether we are comfortable still posting here. I feel betrayed.

urbanracer · Jan 22, 2015

brett said:
urbanracer lol

Engineers always look at the detail Brett. It's what stops bridges from falling down (most of the time).

urbanracer · Jan 22, 2015

zand said:
@Administrator Well I do not trust Facebook. I do not want my posts shared there. I don't mind that my posts are publicly visible but I still don't want them on FB. But I guess admin and the site owners will do what they want anyway. You failed to realise it was of concern because you didn't ask us! Like RRB I feel this is wrong and would like an 'opt-out' option.

I agree with @LittleGreyCat that this forum feels like a family. Facebook does not. I do not want the site owners publishing any of my content on Facebook. I can't see them changing this policy though, so we all have to think seriously about whether we are comfortable still posting here. I feel betrayed.

Once again at the risk of being boring................
9.3 Any content you input or upload to our Website will be considered non-confidential and non-proprietary, and we have the right to use, copy, distribute and disclose to third parties any such content for any purpose.

...........you WERE told.

That's it, I'm outta this thread.

mrman · Jan 22, 2015

urbanracer said:
Engineers always look at the detail Brett. It's what stops bridges from falling down (most of the time).

its very surprising the amount of people who never read the fine print on the tcs.

to be fair its pretty standard these days if anything is posted on the internet, others will see it, share it whether it be an individual or company. But, can understand some members concern with this as in a way being a life long medical condition its a bit like your doc disclosing personal info. Its far more unlikely for friends and family to happen across a post by members on this site, but, could easily happen on a site such as fb. Personally, I'm just as open with friends/family about my condition as I am on here. Also, in a way I think its a positive thing as it does raise awareness.

Robinredbreast · Jan 22, 2015

urbanracer said:
Actually Facebook has exactly the same disclaimer. So once diabetes.co.uk post there, FB can do anything they want with the images. The disclaimer must be in place or diabetes.co.uk wouldn't even be able to share my posts with you.

I would still like an accept or a decline button put in place. I know millions post on facebook and absolutely love it and show and talk about anything and everything.
To me the members on this forum are, in general, so supportive, helpful and such wonderful people. I wouldn't want to lose that. It's like an extended close knit family to me, but I don't want the net to be cast adrift for all in sundry.
Just my feelings.

Looking forward to admin answering my posts in due course

RRB

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