Ep 39: Patient Engagement in Research

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.

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Sus coanfitriones e invitados: ¿Quiénes están en la mesa en este episodio?

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.

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.

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