Preparing Patients for Precision Medicine - Collaboration with the Rheumatology Nurses Society
From Our Special AUTO Ball Series
AUTO Ball Special Series Episode 8
AiArthritis Voices 360 Full Episode 36
Air Date: July 12, 2020
Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. This episode is an excerpt from one of those episodes.
In this episode, Event Host,
AiArthritis CEO and person living with
AiArthritis diseases, Tiffany Westrich-Robertson, is joined by patient Co-Host, Katie Steele.
They speak with Carrie Beach, RN, from the Rheumatology Nurses Society (RNS) about our collaboration to improve patient voices in education and research (featuring our award-finalist Preparing Patients for Precision Medicine project). This is an excellent example how patients and rheumatology professionals sit "at the table" to discuss projects - because during the conversation we actually came up with a new spin on the collaboration! Listen to learn more about our work together to increase patient (and nurse) education about precision medicine and how YOU can join us!
We also start the episode discussing the patient-nurse relationship and how that window of opportunity while we have the nurses' ear could be better utilized.
Learn more about the people "at the table" and other associated
Ai Arthritis Voices 360 episodes below.
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!
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.
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).
Be sure to check out our top-rated show on
Feedspot!
Your Co-Hosts & Guests: Who is at the table this episode?
Event Host: 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.
Katie Steele is above all a survivor. Receiving the harsh diagnosis of Polyticular Juvenile Rheumatoid Arthritis at age seven, she has diligently embraced her role in society as a Mentor, Patient advocate and Spokesperson. Katie’s pioneering spirit became evident in her teen years when she was one of the first fifty children ever to receive biologics. Her decision helped to obtain FDA approval and bring Enbrel to the market for the very first time. This spirit continued to shine through her as a Spokesperson for Enbrel and a ray of hope to her Peers. Katie is motivated by a core desire to help others. The majority of her years have been spent in service to the Autoimmune and Autoinflammatory Arthritis communities. Her efforts have been wide spread taking her to Washington DC multiple times to join the fight for access to care and quality of life. Katie has been inspired throughout her life by the fierce dedication of health professionals she has been surrounded by. She’s a proud member of the Rheumatology Nurses Society, continuously striving to teach others to use their stories, voices, journeys and experiences to strongly advocate for themselves. And to join her in mentoring others and ultimately bridge the gap between Patient and Doctor.
Carrie Beach currently resides in Ohio where she works as a rheumatology nurse at the Columbus Arthritis Center. She studied nursing at the Ohio State University College of Nursing and has been practicing rheumatology since 2003. Carrie has served on the Board of Directors for the Rheumatology Nurses Society since 2015 to advance her passion in rheumatology education. She firmly believes in serving her patients and peer nurses as a leader of thought, subject matter expert, and coach in the application of best practices for patient and nursing education.
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