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What do you all think of #Social Media Listening ?
Happy New Year 2025 PMR Pals ! I have been thinking about delving into one of the abstracts from the ACR2024 meeting entitled "Understanding Unmet Needs and Quality of Life Impact of Giant Cell Arteritis (GCA) and Polymyalgia Rheumatica (PMR) Using Social Media: A Patient and Caregiver Perspective"
I'm including a link to one of the author's linked IN page - (Note she is at Novartis). But what prompted me to write to you today was that I Googled "Kevzara and PMR" and (why am I surprised ?) one of our conversations in Connect was in the Google search! I'll link it here: https://connect.mayoclinic.org/discussion/kevzara-and-prednisone-tapering-before-and-during-kevzara/
for those on Linked IN , see below: and I'll attach a word doc of the abstract
https://www.linkedin.com/posts/pallavi-arun-01505722_acr2024-socialmedialistening-healthcareinnovation-activity-7267228411754897410-kg5v/
Here are some of her comments in the linked IN post:
" ✔️ Industry Recognition: Industry leaders and peers praised the depth and quality of our insights, with many expressing interests in adopting similar methodologies in future
✔️ Engagement from HCPs: Many rheumatologists explored the insights with great curiosity, confirming that the unmet needs identified resonate with the challenges they see in practice.
✔️ Patient-Centered Validation: A particularly rewarding moment was when a PMR patient validated the insights we presented
This experience reaffirmed how social media listening can bridge the gap between patient needs and innovative healthcare solutions. A big thank you to the entire team whose dedication made this possible! "
I have some mixed feelings - I don't want to comment on her LINKED IN page because I want to keep my PMR diagnosis private to my LINKED-In connections . But Maybe I should shout out to rooftops all the HCP limitations and difficulties I experienced in the last 1.5 yrs!
The question I was trying to follow up re:Kevzara was financial issues - I believe some users have said the manufacturer assistance with co-Pay was running out.
Thanks for listening ! - nyxygirl
ABSTRACT NUMBER: 2150 ACR 2024 social media (ABSTRACT-NUMBER-2150-ACR-2024-social-media.pdf)
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Hi DadCue, Is Mayo Connect considered to be "social media"? - I think so. 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. If you have questions like this feel free to use the Contact Mayo Clinic Connect form (link at the bottom left of every Connect page) to contact a moderator. Here's the link - https://connect.mayoclinic.org/contact-a-community-moderator/
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3 ReactionsIF it is true that "Mayo Clinic Connect "posts" are visible to anyone who has the internet and views the Connect site --- What stops anyone from extracting a thread and analyzing it. I don't mean private conversations between two Mayo Connect members.
I don't really care if these discussions and posts about general PMR/GCA topics are public on the internet and can be analyzed. They are my personal experiences that I share with anyone that is interested.
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5 ReactionsThe 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! : (
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4 ReactionsThanks 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.
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2 Reactions"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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2 Reactions"No worries ... I was hoping health care providers were reading our posts."-- ha ha LOL - me too !! I did a little more digging around . I am still intrigued a bit about their particular choice of PMR and GCA . Of all the Rheumatic diseases to chose, maybe juvenile arthritis would have a lot of social media posts all over the place !! ; )
That said - I'll attach a compilation of what I remember from some of the manuscripts that included patient opinions or real time cohort data.
In the Methods , an ethics committee was mentioned, or that data were anonymized . I recalled in particular an Op Ed about a PMR patient's perspective is super interesting. He used a 4000 member FACEBOOK group . I'll attach that.
I guess my thought is that this Novartis poster has such disclaimers about Ethics approvals and/or other details about the methods . And perhaps which specific "social Media" platforms were searched.
ImmunoMedicine - 2020 - Paalman - My new normal A patient s perspective on polymyalgia rheumatica (ImmunoMedicine-2020-Paalman-My-new-normal-A-patient-s-perspective-on-polymyalgia-rheumatica.pdf)
Maria's notes - ethical approval of patient comments:data : (Marias-notes-ethical-approval-of-patient-commentsdata-.pdf)
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1 ReactionThe following studies might have something to do with the interest that Novartis has in PMR/GCA. They must be seeing good results:
https://www.novartis.com/clinicaltrials/study/nct06130540
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https://www.novartis.com/clinicaltrials/study/nct06331312
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My rheumatologist has already mentioned COSENTYX® (secukinumab) to me because I have Spondyloarthritis and PMR.
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I loved this part of the abstract:
"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. The burden of comorbidities associated with the use of GCs was also a recurrent concern."
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2 ReactionsThis is interesting too!
https://pmc.ncbi.nlm.nih.gov/articles/PMC10828953/
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