Community support, education help patients 'stay the course' during COVID-19
Offering patients with rheumatic disease additional education resources, as well as connecting them online to other patients with chronic conditions, can help significantly with medication adherence and anxiety during COVID-19, according to a presenter during a webinar hosted by United Rheumatology.
“The Global Healthy Living Foundation, and our online patient community, CreakyJoints, are committed to providing education, advocacy, patient support and patient-centered research,” Seth D. Ginsberg, president and co-founder of CreakyJoints and the Global Healthy Living Foundation, said during the “On Survival and Resilience: Managing A Rheumatology Practice Through the COVID-19 Pandemic” webinar. “In many respects, since we started this organization 20 years ago, we have been training for this very moment. We provide support to help patients cope.”
First and foremost during a pandemic, Ginsberg noted, providing patients with the educational information tailored to their medical concerns and unique needs is essential. “Obviously, this information isn’t really available through mainstream media,” he said. “We recognized this immediately and have already produced more than 100 pieces of content specific to COVID-19 pandemics, immune issues and so forth.”
As part of this effort, the Global Healthy Living Foundation has developed its own patient-centered registry for COVID-19. Driven by their ArthritisPower app-based research registry, with similar functionality, the COVID-19 registry enables patients to log their outcomes, perspectives and personal interactions with COVID-19.
For United Rheumatology members, Ginsberg noted that the Global Healthy Living Foundation had recently developed a free program specifically tailored to rheumatic disease patients and their families, which allows them to access updated information, community support and other resources specific to their health and safety. Available at www.GHLF.org/UR, this resource is intended to aid patients and their families in coping with isolation, fear and anxiety during the pandemic.
“It’s a free and very simple program to enroll in,” Ginsberg said. “What it does is enable patients to select the type of support that they want, the velocity or timing of how often they receive emails or text messages. What we are trying to do is galvanize the patient community and basically let them know that they will be ok as we help them get through this difficult time.”
Ginsberg acknowledged that there is considerable fear and anxiety surrounding COVID-19, and unfortunately, these factors do not bode well for patients with inflammatory diseases. “At the end of the day, we see our primary role as helping patients to allay their fears and get them through this time as safely and productively as possible,” he said.
With that in mind, Ginsberg shared some key messages that rheumatologists should consider disseminating to their own patients.
“The primary message is to remain calm,” Ginsberg said. “We don’t want patients to make any medical decisions based on what someone posts on Facebook in a meme, and unravel all good work that had been done clinically to date.”
Additionally, he noted that patients should be encouraged to stay in close contact with their rheumatologist or nurse leading up to office or telehealth visits. “We want them to stay the course,” Ginsberg said. “Last, but not least, we want to make sure patients understand that they are not alone. There is a huge community, we are all in this together, and for many people that has helped them get through some of the darker times.” – by Robert Stott
Ginsberg SD. Patient Messaging during the Pandemic. Presented at United Rheumatology webinar “On Survival and Resilience: Managing A Rheumatology Practice Through the COVID-19 Pandemic”; April 17, 2020 (virtual meeting).
Disclosures: Ginsberg reports employment with CreakyJoints and the Global Healthy Living Foundation.