What do you all think of #Social Media Listening ?

This abstract did not mention the problem of being unable to afford Kevrara due to Medicare patients being cut off the patient assistance program and/or having an insurance plan that won't cover it because it is too expensive. I have seen financial concerns mentioned a number of times in discussions. It appears that this abstract was written by drug company employees and they want their industry to look good. I was cut off patient assistance and my cost through insurance would be $16,000 a year. I am going off the drug and will see what happens. It may end up being a good thing but I'd like to have a choice.

Hello @linda7 thank you for adding that, indeed it seems that along with being "perceived as safer" it is odd there is no comment about cost or financial burden of biologicals ! Here is a section of the abstract :
I've decided to comment to her LINKED in post and ask why did her team choose PMR and GCA among the zillions of other diseases : ) ! I know that Novartis has/had a clinical trial for PMR.

" Sentiment of pts around various treatments (n=297) available for PMR and GCA was negative (61%), mostly driven by side effects/intolerability, inefficacy/waning efficacy and flare-ups during steroid tapering. From the overall responses related to treatment perceptions (n=41), glucocorticoids (GC) had a relatively negative perception (35%), whereas biologics had a more positive perception (27%) and were perceived as a safer alternative by pts."

I failed to mention that the Connect "Tips on how to Use the Site" makes it clear that the forum is public. I guess I watched too many Twilight Zone episodes on New Year's Eve where Martians are listening in on us Earthlings. My initial thought about this abstract was that it was kind of creepy !

I find reading a lot of different research papers can be creepy. Now that AI is involved, I'm not sure it's going to get better with big brother listening. 🙃 The Twilight Zone was one of my favorite evening shows. One of my favorite episodes was The Eye of the Beholder - https://www.tvinsider.com/1072968/twilight-zone-best-episodes-ranked/.

My experience of a Rheumatologist is just one perspective but it has been echoed here many times. If listening to social media trends helps them find better ways of relating to patients then it has to be a good thing.

the dates of data collection might help to explain : "Social media content originating from the US and Germany in English and German between Aug 1, 2022, and Aug 1, 2023 were extracted for GCA and PMR." Kevzara ( sarilumab) was only approved in Spring of 2023 for PMR.

@nyxygirl, mtr2601, @linda7, @johnbishop, and all... I'm late to the conversation, but as a PMR and GCA attached patient, I'm interested in catching up. I take 7.5 mg Methotrexate weekly, and 8 mg Prednisone daily. That's as far as my tapering has gone, I still have some symptoms but are tolerable and think I have the thinks boxed up as much as possible for now, with the lowest meds I can tolerate without issues.
I'll read back on our site and catch up... but I am not at all impressed with the AI trials I've been involved in albeit they are quite limited and unimpressive. I don't like being treated like every other patient in the list of my illness... or my doctor. I am not like you or any others with these diseases... as my body reacts it very own way to the illness, the meds, the treatments, my stress levels, my other meds and illnesses and stresses, on and on and on. AI doesn't take those particulars into account, at least I don't think so and saw no illustration that it does.
I'm not pleased to see the direction of our care, personally. Yes, I'm almost 78 years old. But, I've been through decades of horrible care and only this last decade have I found the medical community that most addresses my needs. Mayo mission is what I need. Not Mayo AI. So, I'll work to keep a mind available to be convinced, if/when I see it. I may simply decide to avoid any obvious changes... HMMM... not possible...ess
ess

I understand that anyone can join this group but I'm a very private person. I don't use social media at all. Are you saying that our conversations can be reposted without our notice on other sites?

I'm very confused. Is Mayo Connect considered to be "social media?" Was one the conversations about Kevzara posted on Mayo Connect analyzed as part of the study?

"In total, 21,844 conversations were extracted, of which 1001 filtered posts were manually analyzed. Of the total identifiable reporters (n=517), 90% (n=465) were from the US and mostly females (65%)."

If 21,844 conversations were extracted, I would like to know where all of the conversations came from? I think it would be great if our conversations on Mayo Connect were included.
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"✔️ Patient-Centered Validation: A particularly rewarding moment was when a PMR patient validated the insights we presented."

Who was this PMR patient? I would think at least a hundred PMR patients validating their insights would be more rewarding!!!

Considering there were many "Industry leaders and peers" and many rheumatologists it would seem that patients were under represented if there was only one patient.
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I didn't think the abstract was too earth shaking but maybe the technology is.

I have noticed that Google artificial intelligence sometimes uses information from forums like Mayo Connect.

Mayo Clinic Connect posts are visible to anyone who has Internet and views the Connect site. Private Messages between members are visible only to the members who are communicating with a specific private message.