You may or may not have noticed that since the launch of the most recent version of the site, we now have the option to share a post or question on Facebook and Twitter. These are only available on posts set to 'Everyone', allowing someone to share a post via their social media accounts and therefore help more people with RA or who suspect RA to find the community here.
Nothing has changed in the site’s privacy terms as, someone finding the site through Google or any other method in the past would see as much of a public post as anyone coming through Facebook will do now i.e. they still need to join the site to view more. I know some people are concerned about this addition and I suggest if you do not want your own posts shared you ensure you select ‘Community’ when publishing something which means only people who have joined can see the post or question.
The site has always been very accessible to anyone looking to find others with RA and we want this to continue to be the case. That said, it is imperative that you all be aware of the importance of keeping your identities protected and not risking your privacy through any social media channel, which HealthUnlocked is. Please read more about this at healthunlocked.com/policies...
Of course you are more than welcome to give your feedback about the sharing button to HU directly as they are keen to know what you think of the site. Use the contact form and select Feedback from the category list at support.healthunlocked.com/...
As I said earlier this week, please contact me or the other admins via Private Message if you have any concerns about your safety or privacy when using our community.
I fully understand the necessity to reach as many people as possible who are newly diagnosed with RA, or other associated conditions, as well as long term sufferers. However, I'm not sure that sharing posts on either Facebook or Twitter to reach more of these people, is the right way forward. They are sites with huge followings it's true, and I enjoy keeping in touch on Facebook with family members in different parts of the world which would be more difficult otherwise. However, I've had negative responses from friends of friends etc, which can be upsetting and unhelpful, so I will be selecting "community only" when I have anything to say.
Like other users, I am surprised and disappointed at HU for considering sharing information in this particular way.
Hi petalnumber2,
Thanks for your comment. I'm sorry you are disappointed by this decision so please do feedback to HU. As you say, it depends on the individual's experience of sharing and whether this has been positive for them or not.
From the charity's point of view, it will certainly help if we are suggesting people find out more about the experiences of a particular medication for example but we would have shared the link for this in the past anyway due to the site being open to anyone wanting to join. There used to be a tweet link on one of the older versions so there has been sharing possibilities in the past for the poster as well.
I think things are evolving but we always try and keep the same ethos here that the more the merrier! We are always keen that those needing help and support from NRAS are able to find us easily but are always conscious of the experience of our long term users as well,
I think you should have done a poll to see if members wanted this! first,
I know we still have to click the button but some may forget! and end up clicking the wrong button, then its to late its out there.
I come on here like most do to post! as each and everyone understands what we are talking about and are not sick of the things we talk about, and what we talk about on here we don't say to anyone else as they are sick of hearing about it, i stopped talking about it to my family members as i get the feeling they are sick of hearing about it,
Hi marcus6, unfortunately although NRAS hosts the RA community here, it's HealthUnlocked that own and create the site, making decisions on functionality and all these things. We were not aware that the buttons would be added on this occasion but they normally ask the patient organisations such as ourselves for feedback so I have given this to them and as I mentioned, you are welcome to as well.
A great big no to this from me Ruth. I don't have an account with any social network sites except for this one which is how I wish it to remain. I don't like them & if I wished to be included in them I would have done so. By doing this it concerns me that it could open us to abuse & even possibly ridicule. I particulary want to be able to share my concerns openly & safely with people with the same disease & problems as myself & because of this have always, to my knowledge, opted for the Community option when posting & will certainly continue to do so from now on. I really am disappointed the decision to do this has been taken yet many far better ideas which were suggested by members when trialling the new format don't appear to have been put in place, unless some of the these are in the process of being added, otherwise why add the Pick option? I certainly don't remember this one being suggested. I've always felt I could be honest & open on here with people who have & fully understand the same medical condition & wish to remain so & not feel I have to be guarded which I fear may well happen if by mistake I omit to select the Community option.
My other concern is that if the Community option isn't chosen we could be open to unwanted "members" joining & that would be, in my opinion, difficult to police before the damage is done. We are all aware of problems of late & this is a very real concern for some & I for one think it a retrograde step.
Maybe a better option would have been to keep it as it was with Facebook & Twitter added onto the Everyone button clearly marked maybe with their respective icons so it would be clear - as below
*Everyone inc. Facebook & Twitter
*Community
This way it would serve as a reminder, particularly if the icons were added, to select the preferred option, particularly to those like me who generally choose the Community button for the reasons I've given.
Or, the better option in my opinion, would be to have Community as the default so those who wish to share information could deselect Community & choose Everyone.
Sorry if I've gone on Ruth but I do feel strongly about this.
As you are aware Ruth I think this is a dreadful step in the wrong direction . I don't want people sharing my thoughts or possibly having a laugh at them if they are friends of people here and not actively looking for help with RA. I think health support groups should be kept as that not social networking.
It's well worth becoming a member of NRAS. As well as access to the members forum you also get a very interesting magazine three times a year, regular email newsletters with lots of information and knowledge that you are helping to support the great work NRAS do in supporting us all.
I'm not sure I understand this correctly. Can someone explain to me what happens if I reply to a post that has not been set to 'community only'? Will my reply be visibe to everyone on Facebook/Twitter? I certainly hope not!! I still want to be able to reply openly to everyone on here and not worry that every troll in the internet will be able to read my comments.
Morning Christine. It would seem that unless we specifically select Community that is the case. I'm most unhappy to say the least about this too. Hope you're ok. x
Heya I don't think you can set replies themselves to 'community only', or can you? I'm fine otherwise thank you! Haven't forgotten your message & will reply as soon as I've got a moment (today I'm meeting my parents, my sister and her boyfriend and his parents - I'll feel like the black sheep as I'm the only one who's alone!!). If you do decide to leave the forum, we should exchange email addresses! I am also thinking about leaving, it's just ridiculous to think posting private medical information on the likes of Facebook/Twitter is in any way going to help people affected by RA. Love, Christine xx
Morning Christine. I think I'm right here, selecting Community should block anyone who's not a member as it did before this crazy idea was put in place. What I've resolved to doing is only replying to any posts that don't have the FB or Twitter icons. The only way I may consider otherwise is if my reply doesn't relate specifically to any personal experience or info. I'll try that way & if I'm still not comfortable with that I'll delete my account. I'm with everyone else who's reacted to this decision & now feel vulnerable in what I understood was a safe environment & I don't need the hassle. I think Jo's idea was a good one, to have Community set as default & select Everyone if you wish all & sundry to see the private medical details we share. I think angel_delight also raised a valid reason for this being a bad idea regarding confidentiality in the medical profession. So, yes if either of us decide to leave at least we can swap email addresses & keep in touch without fear of the world & his dog reading our musings!
Have a lovely day with your family, & you're not a gooseberry, they're family!!!
Will the whole of a post be "shared" including all the responses if someone has selected "everyone"?
If answering a post will we know if it being shared in this way?....if not, I will think very carefully before replying to any more posts.
I realise anyone can join and then read posts but I certainly wouldn't want anything I write here to appear on Facebook or any other social network site.
Would it be possible to have Community as the default, so that users have to proactively select Everyone if they are happy for their posting to reach a wider audience? I really do think that this would be the safer option. I appreciate your point about accessibility, but one could so easily breach one's own confidentiality and that is irreversible.
I'm also NOT happy about my posts going on FB, I have many friends and family that go on FB, it is fine for that a social network, not for discussing medical conditions. Even GP's are not allowed to discuss your medical issues with family members. I do NOT agree with this change and I am sorry to say, I will consider whether to continue using this network. Can someone please let me know of another private link I can use.
I support all the previous comments. Another bad decision by NRAS. Surely these decisions should be discussed with members, opinions sought, not imposed as a fait accompli.
Funny, I thought NRAS 's ethos was to improve life for sufferers, not expose our private thoughts and mutual support network to unsympathetic outsiders.
Is this set in stone, or are you willing to listen to your members
The buttons are only there when you start a post. So the poster can select either everyone.......which I notice is put first and already ticked, or community which would keep it within this forum. I don't think there is any way to check if you answer a post whether or not it might end up on fb!
Until I know for sure that posts haven't been put on fb I'm afraid I won't be replying to any more posts. I for one am really sorry about this and quite honestly feel that anyone diagnosed or suspecting ra who already uses a computer......as in face book user.......will already be searching around online to find info and forums anyway . X
I don't talk to my family about RA and got a very ignorant partner to it "does it make you feel a bit sick" he asked. I wish that's all it made me.if it goes on fb I will have to close my account,a place where I can get advice quickly off people who fully understand what your going through x
if you look at ruths first post, on the right side at the bottom of her post you will see a icon for FB or T , i have just clicked on it and this post comes up on FB ( Not good as all our reply's show up as well) i have taken it of my FB, i had to try it to see what came up!, now i know i will not post in any post that has a link at the bottom of the opening post, so from now on when you make a post make sure you click community, and thats where it will stay.
Hey there, Thanks for trying it out!! I definitely won't reply to ANY post from now on that's not set to 'community only'. This is really frustrating. I think I will try and find a properly private forum. Unless NRAS can change the settings so that you can set any reply and comment on 'community only' as well, no just when you start a post.
And thanks for doing that. Sorry if I'm being dim, but does that mean that if the fb link is shown at the bottom of a post it means it has been shared on fb etc?
Does the lock shown on some posts mean it is community so not shared?
Hiya Beaches. If the padlock icon is there it's safe to reply as the whole post including replies is seen by members only & you're right in thinking if the FB & Twitter icon is there (opposite the Recommend button) it's out there for anyone on those including members on other HU sites.
Hope this clears it up for you. I take it you're in the 'against' camp?
Yes I am In the against camp. I'm already very cautious about using online sites but felt relatively "safe" here.
I think it should be made more clear for people writing posts as well so they know they are sharing their post on fb etc. I'm sure most people who haven't read this post and new members in the future won't know.
At least I feel I can still use the site and only comment on posts that have not been shared.
Thanks again and hope you are enjoying the weekend x
The post will only get shared on FB if someone clicks on the FB icon at the bottom of the opening post. (i will not reply to any post that has the FB icon)
so any post you go into make sure it don't have the FB icon before you reply to that post.
A very bad choice. Some of us earn so little that paying another fee is just one step too far. This site has been wonderful. I will now seriously have to rethink whether to continue. It has been such a help with the support of like minded sufferers, and it has been such a morale booster.
I am very disappointed in this decision. I don't Tweet or use Facebook. I am pretty much alone with this disease and this site has given me hope and encouragement. Not sure what to do now. General population does not understand this disease, nor are they interested. This was a very bad decision . Not sure if I will continue to use.
I'm confused. The only reason i come on here and not Facebook is because i want to know that my Facebook friends can't get involved in what i think is a private health matter. So if we press Everyone by mistake, who's Facebook page would this go on??? very bad decision.. what a shame!!
The post will only get shared on FB if someone clicks on the FB icon at the bottom of the opening post. (i will not reply to any post that has the FB icon)
so any post you go into make sure it don't have the FB icon before you reply to that post.
Thanks for all your comments. I’ll try and answer some of your queries but have flagged this thread to the Health Unlocked team so they are aware of your concerns. They have said about these buttons that this does not make formally private content public. They exist only to make content which is already easily locatable via search engines available in another way. HU are going to write a support article on this topic so I'll share this once it's live.
Some of you may not know that NRAS hosts the RA community here but it's HealthUnlocked that own and develop the site, making decisions on functionality and such. We were not aware that the buttons would be added on this occasion but they normally ask the patient organisations such as ourselves for feedback so as I say, your views have been passed on.
A few of you have said that you are worried that people without an interest in RA or with malicious intention will join now but this has always been a risk due the site being completely free and open for all. For those who do not want to be part of an open community, NRAS does provide a separate private members forum which you can find out more about at nras.org.uk/membership
We've had one for a long time but we have also promoted this free and open site as it's always busy, easy to use and gets upgraded as things change in the digital world!
I think some people wanted to know how the shared item would appear on Facebook so I’ve taken a a screenshot of a post I shared which had a couple of comments on it which you can download at we.tl/cPTjRGU0YS. As you can see it appears on my own Facebook account but only displays the title which links to the post (which must be set to ‘Everyone' for it to be shared in the first place). This post had two comments underneath and they only appear once you’ve clicked through to HealthUnlocked.
I just want to reiterate that on joining HU you are advised to keep your identity anonymous, as like many of you have said, you are often discussing personal and medical information so please bear this in mind and read the privacy info I put in my original post. If a post is shared by you or another person, no one should know or be able to find out if you are a member of the site unless you actively tell people your username. Please be careful!
I hope this has cleared up a few things up and I do hope many of you will continue to enjoy this site as it's an amazing resource for people with RA.
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.
I don't think you can set replies themselves to 'community only', or can you? I'm fine otherwise thank you! Haven't forgotten your message & will reply as soon as I've got a moment (today I'm meeting my parents, my sister and her boyfriend and his parents - I'll feel like the black sheep as I'm the only one who's alone!!). If you do decide to leave the forum, we should exchange email addresses! I am also thinking about leaving, it's just ridiculous to think posting private medical information on the likes of Facebook/Twitter is in any way going to help people affected by RA. Love, Christine xx
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