Background/Purpose: After years of ignoring my dry eyes and mouth, unrelenting fatigue, and body pain, an off-the-cuff comment from my dental hygienist finally pushed me to pursue evaluation for my symptoms. In the intervening years from my Sjogren’s diagnosis to the present, I have come to realize I was one of the lucky ones to have had a clear-cut answer based on my blood work. More startling have been the revelations that continue to unfold now as I navigate the healthcare system as both a practicing physician and patient in particular the role of self-advocacy, support groups, and physician-patient communication.

Intervention: Fueled by isolation and frustration, social media and virtual support groups though commonplace prior to the pandemic have grown and evolved considerably in the last 2 years. Interaction amongst platforms has been limited between separate communities found on Facebook, Instagram, Reddit, Smart Patients, and traditional disease-specific support groups. Growing out of a desire to strengthen autoimmune communities and promote advocacy and patient education, virtual events provide an opportunity for anyone in the world with a computer or smartphone and internet access to participate. Additionally, these events also provide a new platform for improved communication between healthcare professionals and patients.

Maintenance: We describe 2 virtual events that occurred between February and May 2022:
1. Virtual Sjogren’s Summit

2. Autoimmune Warrior Conference

Events occurred exclusively in virtual space. Total participation numbered 1768, representing individuals from over 18 countries and 38 states. Event 1 was promoted primarily to those with the representative condition whereas #2 was promoted to all autoimmune patients and healthcare professionals (HCP). Event 2 differed in that Continuing Medical Education credit was made available for physicians and HCPs who elected to claim credit for a small cost ($5/session). Additionally, event 2 was structured with 2 tracks: one primarily geared to patients and the other primarily for HCPs. All participants were welcomed to each of the sessions. All events made sessions were made available for viewing after the event.
94.7% of participants reported that they were committed to taking action or taking action already in their health as a direct result of the event.

Quality of Life: 94.6% of participants from event 1 (N=58) rated the event as very good to excellent. Event 2 had a rating of 9.4/10 for satisfaction. Take-away comments from both events included themes related to the need for self-advocacy, increased appreciation for the systemic nature of the disease, feelings of validation and community, and the role of lifestyle in disease management.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/invisible-to-invincible-the-role-of-virtual-events-in-autoimmune-advocacy-education-and-community-building/