Patient-Reported Symptoms: Connecting the dots to improve education
AiArthritis Voices 360 Full Episode 44
Air Date: September 6, 2020
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 International Foundation for Autoimmune and Autoinflammatory Arthritis 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 on September 7th 2020 - Stills Disease Awareness Day. This project could not have been possible without the participation of patients like you who were willing to donate their time and expertise and share their lived experiences.
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
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Pull up your seat at the table
Now it's YOUR TURN to join the conversation!
What do you think about this episode?
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!
Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!
The AiArthritis Voices Program
Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our 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.
If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect.
Show Notes: Episode 44 - Patient-Reported Symptoms: Connecting the dots to improve education
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
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.
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 (podcast@aiarthritis.org).
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Your Co-Hosts & Guests: Who is at the table this episode?
Tiffany Westrich-Robertson
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels.
Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.
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