Patient Perspectives Session to Amplify Innovative Solutions to Challenging Rheumatic Diseases

Patients living with rheumatic diseases rely on rheumatologists for consultation and treatment; however, care teams can learn a lot from the experiences and insights shared by those who live with these conditions every day.

Patient Perspectives, 8:15–9:30 a.m. on Tuesday, October 28, in Room W192A-C of McCormick Place, will utilize this philosophy by curating presentations from patients to answer the question: What adaptations did you and/or your healthcare team adopt to better care for your health, and how could these techniques help other patients?

“We want to create a partnership with patients because they are the primary stakeholders when it comes to the management of their disease,” explained session moderator Puja Khanna, MD, MPH, Professor of Medicine at University of Michigan Medicine. “They’re living with the disease day to day, not us. We want to empower them with tools and strategies that they feel comfortable using.”

With the proliferation of online support communities, individuals with shared conditions can connect like never before. In addition to finding a supportive and sympathetic community, patients can also exchange life-altering disease management tactics and strategies to optimize their daily living with the given disease.

“Peer support and advocacy can create change by helping individuals find solutions to the challenges associated with their condition without having to jump through the hoops of the healthcare system,” Dr. Khanna said. “Patient Perspectives allows us to amplify those stories through the native source of truth: the patient voice.”

For clinicians, a major piece of the puzzle is understanding what each patient knows (or doesn’t) about their condition. Empowering patients to take charge of their condition(s) is a worthy goal, and digital resources in this era make it easier for patients to learn more than was previously possible. However, they can just as easily be overwhelmed with too much information, sometimes from questionable sources. Talking with patients about their experiences can help clinicians offer a customized approach that is simple yet sustainable. Creating a safety net with the appropriate toolkit helps patients navigate life with chronic autoimmune diseases more successfully.

This year’s presentations will tackle a spectrum of diseases, highlighting creative problem-solving techniques spearheaded by patients with rheumatic conditions, as well as the processes by which they collaborate with their healthcare teams to implement these innovative solutions to improve patients’ holistic well-being. Highlighting this year’s presentations, Dr. Khanna explained that the featured abstracts were selected “based on where we saw that the patient had crafted a practical intervention that could be applied in day-to-day life by other patients.”

This year’s five presentations are:

• The Role of a Palliative Care Support Team to Optimize Outcomes for Patients with Airway Involvement from Relapsing Polychondritis; Patient Presenter: Joshua Sparks
• Breaking Through Scleroderma’s Invisible Struggles: From Isolation to Connection; Patient Presenters: Sheri Hicks, MEd; Mary Alore, MBA
• Lived Experience in Action: How Co-Creating a Psoriatic Arthritis Project Empowered My Journey as a Patient Advocate; Patient Presenter: Kathleen Gallant
• From Invisibility to Advocacy: A Gout Patient’s Journey to Validation and Systemic Change; Patient Presenter: Gary Ho, MA
• Life Transitions and Their Impact on Patients; Patient Presenter: Whitney LaBar, MS

To supplement this year’s Patient Perspectives session, ACR Convergence attendees can peruse additional patient-crafted abstracts in the Poster Hall.

On-demand access to recorded presentations will be available to registered participants of ACR Convergence following the annual meeting through October 31, 2026.