Episode 44: Patient-Reported Symptoms - Connecting the dots to improve education

This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the mission and future projects of the organization and the AiArthritis Voices 360 Talk Show. The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis is proud to announce the impending publication of the first-ever 100% patient-reported symptoms brochure for Stills Disease, launching on September 7th 2020 - Stills Disease Awareness Day. This project could not have been possible without the participation of patients, like you, are willing to donate your time, expertise,  and lived experiences.   This talk show was created to help bring more patient voices into the conversation about this and many other projects. We are very excited to transition to bimonthly episodes and incorporate the new AiArthritis Voices online platform to deepen these conversations and move more of our ongoing projects to their ultimate finish lines. We want YOU to join us at the table! Listen to this week’s episode to find out exactly how you can do that in this exciting new phase of the organization’s work.   Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!   If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY!   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us ([email protected]).   Show Notes: Episode 44 – “Connecting the Dots”   00:53 - Tiffany welcomes listeners 01:15 - Today’s episode is about how patients sharing their experiences can begin to solve the issues facing the AiArthritis patient community 3:00 - Tiffany shares her diagnosis story 5:00 - Many patients research their symptoms online to try and solve the mystery of what is happening with their body 6:18 - Symptoms recognized by the medical community may not always be consistent with the lived experiences of patients 10:09 - AiArthritis conducted an Early Symptoms Study to identify common patient-reported symptoms of 6 AiArthritis Diseases 11:25 - AiArthritis has a unique process that seeks to solve problems thru ongoing patient conversations 12:57 - One of our projects has been to develop a Stills Disease Pamphlet thru a campaign called “My Stills” 16:06 - The first ever fully patient reported Stills Disease brochures including a comprehensive list of symptoms will be published on September 7, 2020 - Stills Disease Awareness Day 17:38 - AiArthritis plans to repeat this process for all the other AiArthritis patient communities we serve 19:11 - Voices 360 will transition to bimonthly episodes so that the organization can devote more development time to each episode to include as many stakeholders as possible and accomplish as many of our goals as possible 20:18 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritisvoices.org and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics 20:38 - View all of our projects at aiarthritis.org 22:03 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis