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Patient Engagement in Research - the OMERACT Experience

AiArthritis Voices 360 Full Episode 39

Air Date: August 2, 2020

New primary outcomes (endpoints that should be measured) in rheumatology trials where shared-decision making between doctors and patients are required...and patients were part of this historic decision. This was part of the international, collaborative of rheumatology stakeholders - OMERACT.... and Deb and Tiffany were there and they want to tell you all about it!


Learn more about OMERACT.

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!)

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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. 

Join AiArthritis Voices

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.


Deb Constien

Deb has been living with Rheumatoid Arthritis for three decades and while she has experienced disability from it, she never lets her disease dominate how powerful her voice can be. 

She has been a key Representative (high level volunteer) for our organization for several years and often takes a leadership role in many programs and mission initiatives, including attending meetings as the voice of the organization. She is also a Platinum Ambassador at the Arthritis Foundation, as well as various other nonprofits, and has formerly and currently used her voice as a Patient Research Partner (Wisconsin Research and Education Network (WREN), OMERACT, Arthritis Power through CreakyJoints and more). She has represented her state of Wisconsin on Capitol Hill and at a local multiples times, and most recently was a key player in helping to pass step therapy legislation in her state.

Relevant Episodes

Personalized vs Precision Medicine

Listen to mini-episode 9 where Tiffany talks about precision vs. personalized medicine. 

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Changing the World with Your Knee

In this episode we mention OMERACT (Outcome Measures in Research) and the work we do with them (including this project!) This group focuses strongly on "outcome measures", which includes outcomes important to the patient. Learn more abou tthis project!

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Related Projects

Preparing Patients for Precision Medicine

Click here to learn about our precision medicine project. 

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AiArthritis Voices

Click here to learn more about AiArthritis Voices

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