I don't know of everyone else has had it but I just received an email and survey from Health Unlocked about some sort of launch and publicity campaign starting in a couple of weeks' time.
I'm afraid it will be goodbye from me if there is any linkage to Facebook, Twitter or similar. For reasons partly to do with privacy and partly to do with lack of synergy, I left the atrial fibrillation group on Facebook.
The message that came from Health Unlocked about what's ahead didn't explain much, so a I may be worrying about nothing. I'm quite happy with things the way they are.
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Mrspat
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Mu understanding they were asking if we would help 'launch' the platform ie: increase their public profile and if you were willing to promote through Healthunlocked as a forum on various platforms such as Facebook and Twitter to just say yes or no so I guess you always have the option of saying no.
I like this platform and the community on it so am happy to promote it, after all in the end they will be looking for some sort of payback for their investment to pay their ways, fair enough as far as I am concerned, I agree they could have given more info though. F
Also had the e mail,started to fill it in but then wondered what the implications of it would be. I don't tweet or facebook either. It would have been more helpful if we knew where they are going with this, however if it means more people are made more aware of the forum and the help and support that is available then it may not be a bad thing but wouldn't want it on facebook or the like.
It's a tough one because, on the one hand, I truly believe as many people with AFib or with family members and friends with the condition should be made aware of this forum - I have to say I value a lot of the advice given on here above much of what I've been told by the medical profession since I was diagnosed with AFib.
On the other hand, having tried them both, I've no time at all for Facebook or Twitter and resent the way a few forums on other subjects that I occasionally contributed to in the past are now only open to Facebook users - although it appears that this is not going to happen here, it would be good to have it confirmed by the powers that be.
I haven't had the email yet, but I am a Facebook user anyway as well as using this Forum and i agree that they should be kept apart. I appreciate the point you have made about them wanting to promote this site but it isn't necessary to put it on Facebook etc. Anybody who suffers from AF only has to type it into the search bar and they will find their way to this site as i did. I can only presume that like everything else in the world today there is some kind of monetary reason for them wanting to do this. I will personally leave the site if it goes to Facebook..
I use Facebook and Twiiter and if it wasn't for twitter, I wouldn't have found this forum. I'm not, however, a member of the AF Facebook group - actually I wasn't aware there was one. I haven't received an email asking me to fill in a questionnaire though. IMHO I would doubt that healthunlocked would allow any form of social media to compromise the privacy of its users.
I filled it in and agreed to put it on Facebook... This forum has been so good to me that I am happy to let other people know it is out there, in case they need support they aren't getting. I've come across a couple of FB friends who have 'palpitations' and know nothing at all about what they should be doing about it. But I understand absolutely people's concerns about privacy and filling the form in is optional, so hopefully it won't be a big issue.
I am happy to help others who are in te same situation we are no matter if on Fb, Twitter, HU, or from the moon. If one person benefits from my experience and it saves them from a stroke, or helps them feel better about themselves and their health I will do it however I can. You control your privacy on fb and Twitter so use those settings and stop worring about privacy. The government knows ALL about you!!!!! Have a happy day.
Have to disagree with you on this one. If you join an open group on Facebook, your posts are viewable by family and friends, not just group members. No amount of tweaking of privacy settings seems to be able to change this.
I am so far confident that what is discussed within this group stays within this group. There is a degree of anonymity here too which is difficult to manage in a meaningful way within Facebook. I don't think the government is all that interested in the regularity of my heartbeat.
My other point is about the focus of Facebook groups. Atrial fibrillation may not know international boundaries but from a healthcare perspective, it was unhelpful to be part of a group dominated by people who have no concept of a free health service and who are focused on how much their medications cost, what their insurance company will pay for and the names of doctors. And the drugs all have different names.
You can create a group on fb and they are the only ones to see this info. I did it with family members because I did not want friends or just acquaintances to see family business or pics of my grandchildren. I personally hope that my condition goes to all my friends so that if they are having symptoms they will not take it lightly. I dealt with AFIB for 10 yrs until I had a seizure and it was diagnosed. If my experiences help others all I can say is thank God.
When I was first diagnosed (this time) I did a search on the web to find out more about AF. It was there I found this Forum. I do use Facebook regularly; but knowing it as I do, I would not start using HU or make contacts with or about HU and AF through its pages. There are always complaints about FB security and how information is used and I would not be happy leaving anything regarding my health out there.
I haven't had the questionnaire yet, I do use Facebook but don't put anything to do with my af on there and would be most upset if my medical condition was posted all over it.
No problems promoting this site, AF, helping, informing, just formally against FB and Twitter personnally! And yes I don't like my information "out there". I will share anything here with you folks, not with the rest of the world! Seen too many mishaps with Facebook. I have NEVER had a FB account and I continually get mail for someone else's Facebook account - personal mail. I have asked them to stop, I have unsubscribed from the option they provide and continue to receive his mails. That is not anywhere near "private". Thank you- those who are on the social network media and are sharing, clearly others will benefit.
I agree with these sentiments totally - I want nothing to do with either FB or Twitter and would at the very least have a totally blank profile were a link to either to be installed from HU.
Certainly social network media can be used to promote awareness of AF and heart arrhythmias in general, but why fix something which ain't broke?
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