Session to Detail How the Patient Perspective Can Transform Rheumatology Care and Research

Patients play a significant role in advancing both clinical care and research, and their varied experiences can greatly strengthen research outcomes. By embracing patient perspectives, clinicians and researchers can develop more relevant questions, gain valuable insights, and prevent misunderstandings.

During Leveraging the Patient Voice to Improve Clinical Care and Rheumatology Research, three experts will address how effectively incorporating the patient perspective can benefit rheumatology care and research. This session will take place on Tuesday, Nov. 19, from 11 a.m.–12:30 p.m. ET in Room 146C of the Walter E. Washington Convention Center and will be available on demand within 48 hours for registered ACR Convergence 2024 participants.

Eileen Davidson, a rheumatoid arthritis patient advocate, research partner, writer, and member of the Arthritis Research Canada Patient Advisory Board, will explore the transformative impact of integrating the patient perspective into research and making research participation more inclusive.

“The discussion revolves around how a patient partner, with no academic background, can get involved in research and the impact they may have, along with effective ways to engage patients without a background in academia,” Ms. Davidson explained.

She hopes to boost attendees’ confidence in engaging with often-overlooked patient populations in research. By involving diverse patient groups from the outset, investigators can significantly enhance the research process and foster stronger relationships between patients and research teams, Ms. Davidson said. This approach not only enriches the quality of the research but also ensures that the outcomes are more relevant and impactful.

Julia Simard, ScD, MSc, Associate Professor of Epidemiology and Population Health at Stanford Medicine, will discuss lessons learned from incorporating patients and caregivers into the research process.

“I’ll highlight what we have learned over the past decade working with lupus patients and caregivers at different stages of the research process. I’ll give examples of insights that led to new perspectives on some research questions that we were pursuing, and also some hiccups that we experienced along the way,” Dr. Simard said.

The patient’s perspective is fundamental to making advances in research, whether it’s understanding practical issues that patients and their families grapple with daily, seeing challenges and opportunities from a different perspective, or providing a different interpretation of data.

“Partnering with patients at different steps of the research process is critical,” Dr. Simard said. “Our group has done it right, and we have done it wrong. Most importantly, we are trying to continue to do it better.”

Christele Felix, Lupus Foundation of America Ambassador and member of the Lupus Research Alliance’s Multicultural Task Force, will discuss how patient-facing organizations can enhance clinical care.

The data and insights presented in the session will apply to early career researchers, trainees, patients, and anyone interested in patient engagement in research with often underrepresented populations. Early career researchers can gain insights and skills in patient engagement to enhance their research impact. Trainees will learn best practices and methodologies for involving patients in research. Patients will understand how to actively participate and contribute to research efforts.