Your experience is key to unraveling the mysteries of COVID-19 - is your experience being counted?

Mini Episode 27

Air Date: June 10, 2020

In this week's mini-sode, Tiffany talks about the importance of being counted in research, especially in times when a new disease emerges and only a select few are truly being studied. This is the case with COVID-19, as most research emerging is based on studying people with confirmed positive results. However, due to lack of testing, false negatives (and positives), and other challenges associated with a disease in its' infancy, it's more important now than ever to ensure ALL people, perspectives, and experiences are counted. 

Our community is asking many questions about how COVID-19 affected our diseases. The only way researchers can gain enough data to fully answer these questions is if all our experiences are counted. So today we are asking you, if you are diagnosed with an AiArthritis disease and believe you were impacted by COVID-19 (whether you tested positive, or not), please participate in the current research efforts!

LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION! 

(Scroll down the page to learn how!)

You can find, follow, and listen on Podbean, Spotify, Apple Podcast, or where ever you do podcasts. Please follow, rate, and subscribe to the show, then share it with someone. Be sure to check out our top-rated show on Feedspot!

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. 

Join AiArthritis Voices


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 (podcast@aiarthritis.org).



Be sure to check out our top-rated show on  Feedspot!



COVID-19 Registries

Our organization and patient representatives are passionate about helping researchers understand our community needs in relationship to COVID-19. We have committed to joining three groups who are leading registry efforts:
  • COVID-19 Global Rheumatology Alliance. In addition to participating as a supporting organization, our leadership is also involved in the behind-the-scenes research committees as patient liaisons and patient surveys. Take the survey today!
  • FORWARD: National Data Bank. Participating will provide valuable information to health care providers going forward to help make decisions about how to treat patients with rheumatic diseases who get COVID-19. Take the survey today!
  • The Arthritis & Rheumatic Disease COVID-19 Project. This patient-powered study of the Autoimmune Research Collaborative will collect longitudinal data about autoimmune patient experiences with COVID-19 in the USA and Canada.  Patients, join the collaborative today!

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.


Relevant Episodes & Projects

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