Global Healthy Living Foundation to Present Pioneering Patient-Centered Research at ACR Convergence 2023

The Global Healthy Living Foundation and its digital, arthritis patient centered research registry, formerly ArthritisPower, will collaboratively present eight scientific abstracts and five patient perspective posters at the American College of Rheumatology Convergence 2023 (Philadelphia, PA, November 10-15, 2023).

Collectively, GHLF researchers will focus on innovative approaches to remote therapeutic monitoring, patient engagement, and personalized care in rheumatic and musculoskeletal diseases.

They will present pioneering work in the field of remote therapeutic monitoring, featuring two impactful projects:

• Patient Engagement and Adherence to Digital Study Tasks: WEARable Activity Tracker Study Exploring Rheumatoid Arthritis Patients' Disease Activity using Patient-Reported Outcome (PRO) Measures, Clinical Measures, and Biometric Sensor Data investigates how three different sources of information about a person’s disease can compare with each other. This study offers key insights on innovative disease tracking methods, including those that can happen outside traditional clinical settings, particularly for diseases like rheumatoid arthritis (RA).
  
  
  
  Study co-author Laura Stradford, MPH, Epidemiology, Senior Project Manager, Patient-Centered Research, at GHLF, said, “This study may indicate that tracking your disease using tools like PROs or a wearable device can provide accurate and helpful information to your clinician. Importantly, when combined with clinical data the combination may provide a more holistic picture of overall disease.”

• Developing a Guided Joint Self-Exam for Rheumatoid Arthritis Patients to Use in Telehealth-Delivered Care, showcases the ongoing efforts to equip RA patients to perform self-assessments at home to guide treatment decisions. “As we move further into the era of telehealth, we wanted to develop a patient-facing training video for patients so that they can perform a joint self-assessment and compare its accuracy with an in-person clinician joint exam (the gold standard),” said Kelly Gavigan, MPH, Director, Data Management and Analytics, at GHLF and co-author of the study.

According to Shilpa Venkatachalam, PhD, Director, Patient-Centered Research Operations and Ethical Oversight, “these studies underscore the importance of patients actively participating in their own care. It's all about making health care more personalized and centered around the patient. Patient-reported data plays a crucial role in helping individuals who are starting new treatments take charge of their treatment journey and helping individuals who have already been diagnosed to stay on top of their disease. These measures can also provide great insight to clinicians when combined with clinical data.”

Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach at GHLF, co-leads a study, Feasibility and Efficacy of Culturally Appropriate Spanish Language-First Patient Education for Rheumatoid Arthritis. This study aims to enhance health knowledge for Spanish-speaking patients with RA through patient-friendly education tools, based on feedback from over 1,000 patients.

Further research topics include a social listening report for IgG4-Related Disease and the development of a decision-making tool for osteoporosis patients, demonstrating GHLF's commitment to addressing diverse rheumatic diseases and the unique challenges patients face.

GHLF anticipates engaging with fellow organizations and professionals at ACR Convergence to share their year-long accomplishments in rheumatic disease research.

Scientific Posters by GHLF, in collaboration with partnering experts and institutions, at the ACR Convergence 2023:

• (0344) Patient Engagement and Adherence to Digital Study Tasks: WEARable Activity Tracker Study Exploring Rheumatoid Arthritis Patients' Disease Activity using Patient-Reported Outcome Measures, Clinical Measures, and Biometric Sensor Data (the WEAR study) (Poster Session A: Patient Outcomes, Preferences, & Attitudes Poster I, Sunday November 12, 2023, 9:00 am-11:00 am)
• (0380) Use of Digital Health Tools to Evaluate Change in Clinical and Patient-Reported Outcomes Among Patients with Rheumatoid Arthritis Initiating Treatment with a JAKi or TNFi (Poster Session A: RA- Diagnosis, Manifestations, and Outcomes Poster I, Sunday November 12, 2023, 9:00 am-11:00 am)
• (0214) COVID-19 Vaccine Uptake, Hesitancy, and Flare in a Large Rheumatology Practice Network (Poster Session A: Infection-related Rheumatic Disease Poster, Sunday November 12, 2023, 9:00 am-11:00 am)
• (0990) Association of Treatment and Disease Activity with Antibiotic Use and Hospitalized Infection among People Living with Rheumatoid Arthritis: Baseline Data from a Longitudinal Study in the ArthritisPower Registry (Poster Session B: Epidemiology & Public Health Poster II, Monday November 13, 2023, 9:00 am-11:00 am)
• (2092) Feasibility and Efficacy of Culturally Appropriate Spanish Language-First Patient Education for Rheumatoid Arthritis (Poster Session C: Patient Education/Community Service- Interprofessional Poster, Tuesday November 14, 2023, 9:00 am-11:00 am)
• (2089) Social Listening Analysis of IgG4-Related Disease Social Media Discussions (Poster Session C: Patient Education/Community Service- Interprofessional Poster, Tuesday November 14, 2023, 9:00 am-11:00 am)
• (2026) Developing a Guided Joint Self-Exam for Rheumatoid Arthritis Patients to Use in Telehealth-Delivered Care (Poster Session C: Patient Outcomes, Preferences, & Attitudes Poster III, Tuesday November 14, 2023, 9:00 am-11:00 am)
• (2025) Osteoporosis Treatment Attributes and Levels for an Online Decision-Making Tool for Patients: Findings from Adaptive Choice-Based Conjoint Analysis (Poster Session C: Patient Outcomes, Preferences, & Attitudes Poster III, Tuesday November 14, 2023, 9:00 am-11:00 am)

The Patient Point of View

The five patient poster presentations presented by members of the CreakyJoints community highlight how people living with chronic, autoimmune illness take control of their disease management by finding community, identifying health care providers who act as partners, and adding complementary therapies or management strategies to their regimen to improve disease outcomes.

Shelley Fritz, Patient Education Fellow at GHLF, will be presenting her poster, Saved by Plants: How a Vital Lifestyle Change Led to a Happier Life with Reduced Rheumatoid Arthritis Pain and Fatigue. Her poster documents her experience with the Mediterranean-style diet recommended in the 2022 American College of Rheumatology (ACR) Guideline for Exercise, Rehabilitation, Diet, and Additional Integrative Interventions for Rheumatoid Arthritis.

Fritz explained her motivation, stating, "I was searching for dietary changes that could positively impact my RA-related pain and fatigue levels. I hope that by sharing my findings with researchers and rheumatologists, other patients can learn how to become healthier and reduce fatigue and pain through dietary choices."

Patient Perspectives Posters Accepted:

• (PP08) Finding Gratitude in Adversity: The Impact of Finding the Right Rheumatologist (Poster Session A: Patient Perspectives Poster, Author Yaideliz Acevedo, Sunday November 12, 2023, 9:00 am-11:00 am)
• (PP10) Saved by Plants: How a Necessary Lifestyle Change Led to a Happier Life with Decreased Rheumatoid Arthritis Pain and Fatigue (Poster Session A: Patient Perspectives Poster, Author Shelley Fritz, Sunday November 12, 2023, 9:00 am-11:00 am)
• (PP01) You Can't Get This From A Doctor: The Role of Support Groups for Adults Aged 22-25 Living With Arthritis (Poster Session A: Patient Perspectives Poster, Author Eileen Davidson, Sunday November 12, 2023, 9:00 am-11:00 am)
• (PP09) Practicing Mindfulness to Improve Quality of Life (Poster Session A: Patient Perspectives Poster, Author Vanessa Patino-Lydia, Sunday November 12, 2023, 9:00 am-11:00 am)
• (PP04) Bouncing Back: How I Found My Running Shoes Using a Rebounder for My Psoriatic Arthritis (Poster Session A: Patient Perspectives Poster, Author Ashley Krivohlavek, Sunday November 12, 2023, 9:00 am-11:00 am)

About Global Healthy Living Foundation

The Global Healthy Living Foundation is a U.S. based, 501(c)(3) nonprofit, international organization whose mission is to improve the quality of life for people with chronic illnesses by advocating for improved access to health care through education, patient-centered clinical research, support, advocacy, and economic and policy research. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international, digital community for millions of people living with arthritis and their supporters worldwide who seek education, support, activism, and patient-centered research in English, Spanish, and French. In addition to arthritis and autoimmune disorders, GHLF supports dermatology, gastroenterology, neurology, cardiology, infectious diseases, and pulmonary patients through a host of different programs and activities which draw nearly 1 million patients a month to GHLF websites. In addition, a library of podcasts via the GHLF Podcast Network, has more than 500,000 listeners to date. GHLF never asks the public for donations. Visit ghlf.org for more information.

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