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What do you all think of #Social Media Listening ?
Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (18)Comment receiving replies
The quickest response re: whether MAYO Connect 'social media' was analyzed might come from the study authors!
And re: "conversations about Kevzara on Mayo Connect" the specifics of this comment is being misconstrued : what I said was that "when I GOOGLED "Kevzara and PMR" the Connect conversation , which I linked , showed up in the Google search.
@johnbishop wrote: "Was one of the conversations about Kevzara on Mayo Connect analyzed as part of the study? - NO! That would be a violation of our guidelines and is not allowed. " - by what mechanism is that not allowed ? In the extent that the site in general does not consent to us all being human subjects in a study.
@teddyz The reason I don't want to reply to the author just yet , is that I believe my identity as nyxygirl could be ascertained . I hope this conversation ( that I started) is not causing undue worry! : (
Replies to "The quickest response re: whether MAYO Connect 'social media' was analyzed might come from the study..."
"The reason I don't want to reply to the author just yet , is that I believe my identity as nyxygirl could be ascertained . I hope this conversation ( that I started) is not causing undue worry!"
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No worries ... I was hoping health care providers were reading our posts. It would be great if technology was such that our conversations could be analyzed to improve healthcare. A single voice in a 15 minute doctor visit doesn't go very far.
The single complaint I read over and over again is--- "nobody in healthcare listens to me and nobody helps me." My healthcare providers listened and helped but there were limits to what they could do. I don't think they lacked insight into the problem
The treatment after PMR was diagnosed was to take Prednisone and hope that PMR "burns itself out" and then or me to taper off of prednisone. My healthcare providers knew that long term Prednisone use wasn't ideal treatment. They encouraged me to taper off prednisone as soon as I could.
The notion that Prednisone is the "only treatment" for PMR and the side effects are manageable when you know how will only maintain the status quo. My quality of life wasn't that good on long term prednisone and I'm happy my rheuumatologist heard me say that and did something about it. We mutually agreed that taking prednisone for the rest of my life wasn't a good outcome.
I went to the Linked In site to see what the comments were. I forgot that I had a Linked In account. I must have turned off all the the notifications I was getting from them.
There weren't any comments that would improve healthcare because of the abstract. There were only people giving praise to the authors for writing and presenting the abstract. I don't think there was any feedback from any patients.
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Thanks for the tag and clarification @nyxygirl. I probably should have made my earlier response more clear. From my perspective the Connect guidelines do not allow studies hosted on Connect unless they have been approved by Mayo Clinic. That said, because Connect is a public forum available to anyone with an Internet connection, it's also why we remove email addresses posted by members so that we can protect their privacy and anonymity. Who likes spam anyway 🙃
I also would like to add that because Connect is a public forum on the Internet, it allows people to find relevant discussions on Connect using Google and other search engines. Connect has improved the search function in the past few years making it more user friendly and easier to find other members who share your symptoms.