Panel to Offer Strategies to Increase Cultural Humility in Pediatric Rheumatology

If the medical community does not understand how to optimize diversity — the presence of difference — healthcare professionals are at risk of providing care that can compromise patients’ health. Cultural humility is a concept of emphasizing lifelong learning and commitment by clinicians to look at how open they are to understanding the presence of difference when it shows up in their offices, hospitals, or organizations.

During Cultural Humility for the Pediatric Rheumatologist, a panel will discuss challenges with access to care and transition of care for pediatric rheumatology patients of different backgrounds with a focus on cultural humility. This session will take place on Sunday, Nov. 17, from 1–2: p.m. ET in Room 204ABC of the Walter E. Washington Convention Center and be available on demand within 48 hours for registered ACR Convergence 2024 participants.

Jillian Rose-Smith, PhD, Vice President and Chief Health Equity Officer of the Hospital for Special Surgery, will provide an introduction to cultural humility, which she says challenges healthcare providers to prioritize their own curiosity and the recognition of their own limitations and biases. It also creates an opportunity for clinicians to co-create care with their patients, which can lead to more optimal outcomes.

“It implores us to ask ourselves: Do I know enough about this person, their situation, the environment, to truly know if these innovative treatments or interventions that we have to offer will be successful or just fall apart when people get back into the places where they live, work, worship, and play?” she explained. “Cultural humility inspires us to ask questions about social determinants of health (SDOH) and other demographics, behavior, and lifestyle questions that help us to understand what’s most valuable to the patient, and partner with them on how our treatment plan can be integrated into their lives.”

Adaobi Ugochukwu, MD, a first-year pediatric resident at Children’s National Hospital, has had lupus since she was 9 years old. In this session, Dr. Ugochukwu will share her perspective on living with this disease for more than 20 years and highlight how pediatric rheumatology has evolved.

“Our goal is to talk about how pediatric rheumatology care looks from the patient perspective with patients from many different backgrounds. Then we will focus on the challenge of access to care and how the availability of resources, or lack thereof, impacts care,” Dr. Ugochukwu said.

The panelists will provide action items to empower the audience to improve access to care and clinical outcomes by recognizing cultural, physical, and socioeconomic barriers.

“We want participants to understand that they have so much power to change the trajectories of these patients and these families just by listening to them, advocating for them, and understanding the context in which they’re meeting these families,” Dr. Ugochukwu said.

Shiloh Kantz, Executive Director of the Oklahoma Policy Institute, will discuss difficulties in accessing care for pediatric rheumatology patients.

“My work isn’t what brought me to this conference,” she said. “It was my daughter. In 2022, our daughter was diagnosed with juvenile idiopathic arthritis (JIA) and then got an updated diagnosis in October 2023 of juvenile systemic sclerosis (JSSc).”

However, Oklahoma lost the only pediatric rheumatologists in the state in August 2023. Now the families of about 380 children living with rheumatic disease must figure out where they are going to get their healthcare. For Ms. Kantz, getting care for her daughter now involves an eight-hour round-trip drive to Texas.

She will talk about uplifting the patient experience, focusing on the humanity of the patient, and working as a community to identify and eliminate barriers to care and to quality of life.

Elizabeth SantaCruz, of Lupus and Allied Diseases Association, Inc., and LupusChat, will also participate in the session.