Patients bring their perspectives to ACR Convergence

The patient perspective is more than a talking point in rheumatology, it’s a vital part of understanding, treating, and managing autoimmune disease. That personal perspective is so vital that the ACR is bringing two dozen patients to Philadelphia to present their stories on everything from vaccinations during the COVID-19 pandemic, to the need to monitor one’s own medical records, to finding a new rheumatologist, and so much more.

“Everything I do in medicine is for my patients,” said Puja Khanna, MD, MPH, Associate Professor and Associate Chief of Clinical Affairs and Service Chief for Rheumatology at the University of Michigan. “Patients are the key stakeholders in rheumatology. The patient’s journey through these unprecedented times—hearing their stories, how they coped, revisited their goals and dreams, the unforeseen gaps in their care—makes a huge difference to pivot rheumatology’s current practice. When you are open to hearing the patient side, you are able to create that critical partnership that gives them the best possible results.”

Dr. Khanna will moderate a session dedicated to the patient voice on Saturday, November 12, from 5–6 p.m. ET, in Room 126 of the Pennsylvania Convention Center. Patient Perspectives will be presented in person at ACR Convergence and be available for on-demand viewing after the session. It follows a two-hour virtual poster session from 1–3 p.m. ET.

“So many groups in healthcare talk about the importance of the patient perspective, but we created a platform to give patients a physical voice,” Dr. Khanna said. “This isn’t an abstract distillation. This is the native voice of truth coming from the source.”

Four speakers will highlight their personal experiences of life with rheumatic disease and with rheumatologists. Presentations include:

• The Journey to Collaborative Care and Patient-Centric Educational Opportunities for a Scleroderma Patient
• Planting Seeds of Self-Advocacy: Increasing Healthcare Engagement in Children and Adolescents Through Arthritis Camp
• From Denial of Spondyloarthritis to Becoming a Support Group Leader and Medical Doctor of Rheumatology: A Patient’s Perspective
• Chronically Catherine: A Sex and the City-Inspired Autobiographical Column for Disabled Young Adults on Subjects We Really Care About — Like Disabled Dating and How Hot Cheetos Saved My Life

“The healthcare paradigm has shifted away from where the physician holds the gateway to all there is to know about a patient, although they do come from a place of knowledge about the patient’s disease,” Dr. Khanna said. “Patients are more voracious about information and obviously know far more about themselves than we can ever find in the medical record. As a result, we have to account for each individual journey to even begin to put the clinical puzzle together. Without the patient’s perspective to understand patterns, we are left rudderless.”

Part of the puzzle is understanding what each patient knows about their condition. Digital resources make it easier for patients to learn more. However, they can be overwhelmed with too much information and information from unverified sources. Talking with patients about their experiences can help clinicians guide and curate their information gathering.

“Highlighting their journey is a way to point patients toward reliable resources, such as the Lupus Foundation, Rheumatoid Arthritis Support Network, and the ACR,” Dr. Khanna said. “Every patient experiences their disease in their own unique way, but we can help them filter out the noise and apply only useful information. That foundation starts with really listening to their experiences.”