Relatable Rheumatology: Making the Invisible Visible Using Patient-Reported Outcomes in Research

Published on: 

In today’s episode, we explore how the lived experience of someone with rheumatoid arthritis can systematically be documented via the use of patient-reported outcome measures.

In the first podcast episode of Relatable Rheumatology: From Studies to Stories, Shilpa Venkatachalam, PhD, MPH, director of Research Operations and Ethical Oversight, Patient Centered Research at the Global Healthy Living Foundation, interviews Susan Goodman, MD, professor of Clinical Medicine at Weill Cornell Medicine and director of the Integrative Rheumatology and Orthopedics Center of Excellence, as well as an educator and patient advocate who lives with rheumatoid arthritis and other comorbidities.

Today, our host takes a deep dive into the world of patient-reported outcome measures (PROs): what it is and why it matters to patients and clinicians. Specifically, how the lived experience of someone with rheumatoid arthritis can systematically be documented via the use of PROs.

Venkatachalam also mentions a Global Healthy Living Foundation study in which adult patients registered in the ArthritisPower registry were invited to select PRO symptom measures they felt were important to digitally track for their condition using the ArthritisPower app. The symptoms that rheumatology patients prioritized for longitudinal tracking using a smartphone app were fatigue, physical function, pain, and morning joint stiffness.

“Living with a rheumatic disease can be a journey filled with questions, uncertainty, and challenges,” Venkatachalam concluded. “Whether it's navigating the diagnosis process, understanding treatment options, or managing symptoms, it can be difficult to find reliable information and support. We created this podcast to bring together real-life experiences of people living with rheumatic diseases and expert research evidence to shed light on the questions and challenges faced by those living with these conditions.”

The podcast is a co-production by the Global Healthy Living Foundation, a non-profit organization dedicated to improving the quality of life for people living with chronic illnesses, and HCPLive.