Wednesday, October 13, 2021

My EULAR 2021 Experience*

This post is long overdue. Blame it on pregnancy, I guess. Way back in June, I virtually attended the European Alliance of Associations for Rheumatology (EULAR) Congress.

This was the first big conference I attended virtually and it was a lot to take in. Normally, when you attend in-person, you have to really pick and choose because you can only attend one session at a time. But because of time difference between the United States and Europe, most of what I attended, I wasn’t attending live. So it provided the opportunity, in a way, to be in two places at once, and to explore more sessions that I might have otherwise gotten to attend.

I attended sessions on a variety of topics, including:

-         The challenges patient organizations faced during the pandemic

-         Co-/multi-morbidities

-         Collaborative research and patient participation in decision-making

-         COVID-19

-         Diet and Rheumatoid Arthritis

-         EULAR recommendations

-         Fatigue

-         Health disparities

-         Lupus and pregnancy

-         Multidisciplinary care in Rheumatology

-         Stress

-         Treating Lupus to target

-         Treating Rheumatoid Arthritis 

Unsurprisingly, various topics around the COVID-19 pandemic and its impact on rheumatology patients was front and center. But so were topics that surprised me, like the impact of a vegan diet on RA outcomes. I’m vegan, so I was so there for that. I certainly could spend time here talking about individual sessions, because there were many that actually made me think that the discipline of rheumatology has come farther than I previously thought in the 13-plus years that I’ve been sick. What I really want to talk about is the culture of EULAR.

What struck me the most about the EULAR experience, even from across the world and behind a screen, is the role that patients play. EULAR has a specific track dedicated to patients, PARE (People with Arthritis and Rheumatism). Sight unseen that impressed me. But the whole feel was just much more patient-friendly than other professional conferences I’ve attended. Like the doctors presenting realized that without their patients, they wouldn’t be able to do what they do.

Many presentations included patients and some sessions were entirely patient-led (read: not presenting posters in the far corner of an exhibition hall). I’m super appreciative of EULARs efforts to recognize and elevate the patient experience, to include patients in the research process, not just as guinea pigs but as equal participants, and to allow patients to have a seat at the table, and a voice, at their Congress. Not only that, it seemed like patient participation wasn’t just a one off, once a year, let’s include patients at the conference so we look cool kind of thing. There is definitely a commitment to making sure that patients are included.

In 2021, I don’t think this idea of patient inclusion at professional conferences should be so novel, and yet it is. I just hope that other organizations can take a page out of EULARs book and do some soul searching regarding their level of patient inclusion. Nothing about us without us, right?

For contrast, read about my American College of Rheumatology (ACR) experience from 2014.

And if you’d like to hear more about the EULAR experience, and specific sessions, you can watch all of the AiArthritis debriefs on YouTube.

It was a pleasure getting to know and spending (virtual) time with the ladies of AiArthritis.

* The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) sponsored by attendance at EULAR and this post. However, the content and opinions expressed here are solely my own.

1 comment:

  1. EULAR was the best last year and it got even better this year. I have always loved scientific conferences but allowing patient to lead sessions is fantastic. I am glad you enjoyed it as well.