"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.