Beyond Tokenism: Redefining Patient Expertise in Lupus Care
Both as a patient advocate and in my professional career, I’ve had the privilege of working on many projects, but few have felt as deeply personal or impactful as my recent work with the American College of Rheumatology (ACR). For me, living with multiple autoimmune diseases has taught me that "patient-centered care" shouldn't just be a buzzword—it has to be the standard.
I’m proud to share that this work has recently culminated in two major milestones for the Lupus community.
1. Shaping the 2024 Lupus Nephritis Clinical Guidelines
First, I had the honor of serving on the patient panel that provided direct input for the 2024 ACR Guideline for the Screening, Treatment, and Management of Lupus Nephritis.
Alongside fellow Lupus Warriors, I shared the realities of this disease—from the challenges of a kidney biopsy to the daily toll of prednisone side effects. We discussed our collective goals: living with minimal symptoms so we can continue to live our lives to the fullest. I believe this input helped shape the actual recommendations doctors will use to treat patients moving forward, and I am incredibly humbled to be officially recognized in the acknowledgments section of these guidelines.
2. Redefining Patient Involvement in Medicine
Building on that experience, I worked alongside researchers and physicians who were a part of the ACR guideline update to further analyze and describe the impact of our panel's input. This led to a second, dedicated publication in Arthritis Care & Research:
In this paper, we break down why it is vital to move beyond "token" involvement and engage people living with the disease as experts in their own lived experience. By documenting this process, we hope to provide a blueprint for other guideline committees to follow—ensuring that the patient voice is the foundation of how healthcare is delivered, not an afterthought.
GLG Advocacy
At Good Life Group, we believe that doing good should feel great—and for us, that means making sure our community’s voice is heard where it matters most. We want to empower those facing autoimmune diseases to realize that their story has the power to change the care they receive. My work with the ACR is just the beginning of how GLG intends to bridge the gap between patients and the healthcare community.