Hear ye, Hear ye: The Patient Voice in Rheumatology

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The importance of patient perspectives, ie, the behaviors, concerns, and experiences of patients with rheumatic conditions, and patient-reported outcomes, were highlighted through several studies presented at the American College of Rheumatology (ACR) Convergence 2021.

In this episode, Shilpa Venkatachalam, PhD, MPH, and Betty Hsiao, MD, discuss research carried out by their respective teams emphasizing the role of the patient voice in rheumatology research and clinical practice. 

Read the full transcript for this episode here.

Shilpa Venkatachalam, PhD, MPH, is associate director of patient-centered research at CreakyJoints® of the Global Healthy Living Foundation and co-principal investigator of CreakyJoints’ ArthritisPower, the patient-powered research network.

Dr Venkatachalam manages and co-leads several of the organization’s research projects, including a collaborative research group on autoimmune and systemic inflammatory syndrome. She has previously been project lead on a Patient-Centered Outcomes Research Institute (PCORI) engagement award called Social Media and Research Toolkit (SMART), which developed best practices for using social media to engage patients in all phases of research.

More recently, Dr Venkatachalam led a PCORI Dissemination Engagement Award on chronic pain and a collaborative project on understanding the concerns, behaviors, and experiences of people living with autoimmune and rheumatic conditions during the COVID-19 pandemic. She is currently also leading a PCORI Stakeholder Convening Engagement Award titled, “Vaccine Uptake Research in Autoimmune Disease: Multistakeholder Planning.”

Dr Venkatachalam completed her undergraduate degree in Mumbai, India, before moving to the UK to complete a Masters in literature at the University of Durham, and earning a PhD in critical theory at the University of Nottingham, UK. Following significant life events that required navigating health systems as a patient and caregiver, she earned an Advanced Master’s in global health from New York University, during which she also won the prestigious Paul Ambrose Scholars Program fellowship that was awarded by the Association for Prevention Teaching and Research. She was among the 25 chosen by The Young Persons Chronic Disease Network in collaboration with the American Cancer Society and the Harvard Global Equity Center for the Global Cancer Advocacy Training.

Dr Venkatachalam has worked internationally in India, the UK, Trinidad and Tobago, and Chad. She has been an invited panelist for video conference presentations on global health topics by the Ambassador’s Club at the United Nations. She also serves on the Science and Policy Advisory Council for the National Pain Advocacy Center (NPAC).

Dr Venkatachalam lives with rheumatoid arthritis (RA) and also served as a patient representative and voting member in the development of the 2021 ACR guidelines for the treatment of RA.

Betty Hsiao, MD, is an assistant professor of clinical medicine and the associate program director of the rheumatology fellowship at Yale University. Her research interests lie in understanding how to improve both patient and physician decision-making, with emphasis on decision-making for patients with RA, as well as understanding their preferences for different treatments.

Dr Hsiao earned her medical degree at the Ross University School of Medicine and is a member of the ACR. Dr Hsiao earned a Bachelor’s of Science degree from Columbia University in Industrial Engineering and Economics.