CreakyJoints®, the digital arthritis community for patients and caregivers worldwide and part of the Global Healthy Living Foundation (GHLF), today announced the launch of eRheum.org, a new digital destination to help patients get the most from their telehealth appointment. Data presented at the 2020 ACR Convergence by CreakyJoints from our ArthritisPower supported Autoimmune COVID-19 Project showed that as the pandemic ramped up (post-March 15, 2020) return patient appointments dropped and telehealth visits increased, but not enough to overcome the frequency of missed/cancelled in-person appointments. This is a problem because disruptions in rheumatology care slow the rate at which patients can be diagnosed and treated, adversely affecting health outcomes and chronic disease management. Optimizing the availability and effectiveness of telehealth appointments will help with continuity of care.
“After consulting with rheumatologists and speaking with our patient members, we recognized the urgent need to help patients understand how to access telehealth and make the most of their virtual appointment,” said Louis Tharp, executive director and co-founder of CreakyJoints and the Global Healthy Living Foundation. “Written in patient-friendly language, eRheum defines telehealth and how rheumatologists utilize it, provides patients with access to difference video conferencing portals to try with their physician, and explains how to make the most of your limited face-to-face time with your physician during the appointment itself.”
Taking Advantage of Telehealth
In May of 2020, GHLF asked its chronic disease patient community to rate their experience with telehealth over the previous two months on a scale of 1-10 (where 10 = excellent experience). Seventy-three percent of respondents said they have used telehealth in the past two months and of those who have used it, they rated with experience as eight. Given the positive response, CreakyJoints built eRheum.org with arthritis patient input and then shared it with provider groups to encourage them to share it with patients in their care. In addition to the main portal, eRheum has been adopted and co-branded by the Association of Women in Rheumatology (AWIR) and the Rheumatology Nurses Society™ (RNS).
“We’ve taught our patients who are on immunosuppressants for so long to avoid communicable diseases, particularly during flu season. This pandemic has really affected their willingness to venture out of their homes, even to medical appointments. Understandably, those with chronic diseases like inflammatory arthritis, who also already belong to a group with some of the highest risks for COVID-19 serious complications, such as blacks, Hispanics, the elderly, or those who are overweight, are most reluctant to venture out,” said RNS President Cathy Patty-Resk, MSN, RN-BC, CPNP-PC. ”We introduced eRheum to our nurses and advanced practice providers in our organization because we want to continue to be the resource they need for their patients. The tools available on eRheum promote confidence in patients to ask their questions to get the care they need to continue effectively managing their condition.”
“AWIR is dedicated to improving the health of all patients with rheumatic diseases and bridging the gaps experienced by patients from diverse backgrounds. Virtual care allows us to bring our caring to our patients wherever they are, and wherever we are. We embrace this initiative to optimize care for our patients,” said Grace C Wright M.D. PhD., President of AWIR.
Understanding Telehealth Best Practices
Recently, the University of Alabama at Birmingham announced that the university and collaborators such as Cedars-Sinai Medical Center and CreakyJoints and its ArthritisPower® Research Registry received a two-year, $400,000 grant from the American College of Rheumatology’s Rheumatology Research Foundation to support telehealth-delivered healthcare. The Telehealth-delivered Healthcare to Improve Care (THRIVE) project’s primary investigator, Swamy Venuturupalli, M.D., is the recipient of this year’s ACR’s Norman B. Gaylis, M.D., Clinical Research Award, and the study is slated to begin in January of 2021.
THRIVE seeks to evaluate the quality of telehealth services when provided to a rheumatology patient in their home and deliver recommendations for physicians about best practices regarding what telehealth-related care delivery should include, how to deliver it, and how to standardize high quality care. It will produce a peer-reviewed white paper that describes those best practices. Overall, the goal is to expand the impact of rheumatology by increasing patient access to care, especially among those marginalized or most at risk by the COVID-19 pandemic. CreakyJoints will produce a patient-facing training video that will show rheumatoid arthritis (RA) patients how to perform joint self-assessment and compare its accuracy with an in-person clinician joint exam (the gold standard).
“Telehealth offers patients the flexibility they need to stay in contact with their doctors, but this works only when both parties understand how to get the most out of the appointment,” said W. Benjamin Nowell, PhD., Director, Patient-Centered Research at CreakyJoints, principal investigator of the ArthritisPower Research Registry, and a co-investigator of the THRIVE study. “Telehealth in rheumatology has some unique features and this study is an important complement to eRheum as it enables us to further enhance the telehealth tools and education we offer to rheumatologists and people living with arthritis. Ultimately, we want to do all we can to ensure productive and satisfying telehealth appointments for arthritis patients and their doctors.”
CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites www.CreakyJoints.org, www.creakyjoints.org.es/, www.creakyjoints.org.au, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver and healthcare activists.
As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org) with more than 29,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), visit www.CreakyJoints.org.
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