Preparing Patients for Precision Medicine - Collaboration with the Rheumatology Nurses Society
De nuestra serie especial AUTO Ball
Serie especial AUTO Ball, episodio 8
AiArthritis Voices 360 Episodio completo 36
Fecha de emisión: 12 de julio de 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.
En este episodio, el presentador del evento,
AiDirector ejecutivo de Arthritis y persona que vive con
AiTiffany Westrich-Robertson, experta en enfermedades artríticas, está acompañada por la paciente Katie Steele, quien también participa como coanfitriona.
Hablan con Carrie Beach, enfermera titulada de la Sociedad de Enfermeras de Reumatología (RNS, por sus siglas en inglés), sobre nuestra colaboración para mejorar la participación de los pacientes en la educación y la investigación (presentando nuestro proyecto finalista «Preparando a los pacientes para la medicina de precisión»). Este es un excelente ejemplo de cómo pacientes y profesionales de la reumatología se sientan a la mesa para debatir proyectos, ¡porque durante la conversación surgió una nueva perspectiva para la colaboración! Escuche para obtener más información sobre nuestro trabajo conjunto para mejorar la educación de pacientes (y enfermeras) sobre medicina de precisión y cómo usted puede unirse a nosotros.
También comenzamos el episodio hablando sobre la relación paciente-enfermera y cómo se podría aprovechar mejor esa oportunidad que tenemos mientras contamos con la atención de las enfermeras.
Conozca más sobre las personas "en la mesa" y otros asociados.
Ai A continuación, los episodios de Arthritis Voices 360.
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
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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!
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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).
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Sus coanfitriones e invitados: ¿Quiénes están en la mesa en este episodio?
Anfitriona del evento: Tiffany Westrich-Robertson
Tiffany es la directora ejecutiva de la Fundación Internacional para AiArtritis y utiliza su experiencia profesional en mapas mentales y resolución de problemas para ayudar a otros, como ella, que viven con AiLas enfermedades artríticas actúan en conjunto para identificar y resolver problemas comunitarios pendientes. Durante los últimos años, ha continuado su formación en investigación, llegando a ser moderadora profesional de grupos focales, y ha aplicado esta experiencia en nuestra organización para desarrollar proyectos innovadores y galardonados que están llevando la participación de los pacientes a un nivel superior.
Tiffany ha formado parte de varios consejos asesores, incluidos aquellos que promueven la participación de los pacientes en políticas, ensayos clínicos y medicina de precisión. Además de evaluar subvenciones en PCORI y para el Departamento de Defensa, fue la única revisora de subvenciones de pacientes para el Instituto Nacional de Artritis y Enfermedades Musculoesqueléticas y de la Piel entre 2015 y 2018. Actualmente participa como socia de investigación de pacientes para OMERACT (Medidas de Resultados en Reumatología), codirige la iniciativa internacional de nuestra organización para promover la participación de los pacientes en la investigación reumatológica (el Consejo ACTion) y ha dedicado su carrera profesional a capacitar a otros pacientes para que utilicen su voz e influyan en el futuro de millones de personas.
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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