End of Year Review
AiArthritis Voices 360 Full Episode #7
Air Date: December 29, 2019
This week, join your host, Tiffany, as she gives a heartfelt 2019 Year End Report on our organization's work to benefit the AiArthritis Community. You will have a front row seat as she explains the important work we have been doing since its inception and the organization’s goals for 2020.
Our organization needs your support to continue these projects. Learn how you can help make a difference in medical research, patient advocacy, pharmaceutical development, spreading awareness, public and physician education, and improving the quality of life of patients living with AiArthritis diseases.
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 7 – “End of Year Review”
00:56 – Tiffany welcome listeners
01:55 – our organization was founded to prevent people from experiencing Tiffany’s struggle to obtain a diagnosis
03:10 – AiArthritis diseases that are not found early can result in permanent changes to a person’s life
04:15 – Please consider gifting to our organization so that we can continue our mission
04:35 - We are driven by the idea that patient experiences are key to finding solutions that impact education, advocacy, and research on AiArthritis diseases
07:00 - Our organization's facilitated conversations among patients that helped to create a list of early symptoms of AiArthritis Diseases to help physicians and patients recognize symptoms as early in the disease progression as possible
8:00 - We listen to all patient opinions and uses that input to create solutions
10:00 - In 2015, our organization launched an investigation of the ethics of step therapy
14:05 - We realized that insurance companies were basing decision on research gathered from clinical trials which excluded a majority of patients because their disease progression did not fit the standard
18:16 - Our organization established World AiArthritis Day to educate people about Autoimmune and Autoinflammatory Arthritis
18:45 - We promote the understanding of the early symptoms of AiArthritis so that patients and physicians will seek input from rheumatologists sooner
20:04 - Our organization used this information to create early detection models and provided them to primary care physicians to assist in early identification of patients with AiArthritis symptom onset. We need your support to continue this work
21:00 - We are actively seeking individuals who have symptoms but no diagnosis so that researchers can collect early symptom information that is not based on recall after the fact. This work is unprecedented and is based on needs identified by medical researchers.
22:37 - This work is funded by donations, not grants
23:00 - We have spent a year developing AiArthritis Voices, an online forum for promoting education, advocacy, and research of AiArthritis Diseases
24:08 - AiArthritis Voices 360 Podcast was the result of an Innovation Award Grant
24:43 - This podcast was founded to give people around the world a voice in the important discussions about AiArthritis Diseases, even if they are not able to participate in online forums or medical conferences
25:55 - We cannot continue our work with the online forum or the podcast without support from donors
26:20 - In 2019, our organization started working on the Patient Reported Stills Disease Brochure Project to identify patient reported early symptoms of Stills Disease
28:35 - We hope to expand this project to create patient reported brochures for the other AiArthritis diseases
28:47 - Our organization attended 2 rheumatology conferences in 2019: American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) to collect information and disseminate it our members.
29:10 - We need donor funding to collect information at conferences and share it via the podcast and the online forum
30:00 - Our organization partnered with the Rheumatology Nurses Society on our precision medicine project as a result of meeting them at the ACR conference in 2018; attendance is important!
32:28 - In 2020, we will develop an educational component to teach patients the difference between precision medicine and personalized medicine
34:15 - In 2020, our organization will continue to develop the AiArthritis Voices online forum and seek to train patients to act as focus group moderators to decrease the cost of medical research
36:08 In 2020, we will continue to focus on educating the public about biosimilar treatment options
37:38 - Our organization will continue working to protect access to treatment for patients with employer-provided health insurance in the US
41:00 - Our organization will be hosting our first Gala, The Auto Ball, on Friday, May 15th at the National Museum for Transportation in St Louis, MO, which will also serve as the official launch party countdown to World AUTOimmune & AUTOinflammatory Arthritis Day, May 20th. Let us know if you want to get involved!
44:24 - We need your support to continue the important work we are doing to benefit the AiArthritis Community
44:43 - One time gifts can be made at www.aiarthritis.org/donate
45:00 - Vocal Impact Partners can make a monthly gift beginning at $10 per month, Sign up at www.aiarthritis.org/VIP
46:15 - Tiffany thanks listeners for their support of the podcast and our organization
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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Learn more about the initiatives mentioned in this episode
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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