Chronic disease patient nonprofit launches online COVID-19 support program
The nonprofit Global Healthy Living Foundation, and its digital advocacy community CreakyJoints, have launched of an online COVID-19 support and education program for patients with chronic conditions and their families.
“This free public health information, patient support, advocacy and research initiative now houses all of GHLF’s COVID-19 specific content, while connecting likeminded patients across multiple chronic conditions,” Seth D. Ginsberg, president and co-founder of CreakyJoints and the Global Healthy Living Foundation, told Healio Rheumatology.
“Members of this support program participate through continuously updated, disease-relevant and accessible information and support information delivered by email and text message,” he added. “The support services are tailored to the medical concerns and unique needs of chronic disease patients and their families.”
The program, accessible at ghlf.org/coronavirus-patient-support, allows patients and their families to access updated information, community support and other resources specifically aimed at their health and safety concerns, according to the group. Further, the Global Healthy Living Foundation has streamlined its digital, social and mobile platforms to offer education and updates targeted at patients with chronic disease, publishing new articles, infographics and illustrations related to the pandemic every week.
According to Ginsberg, all information presented is intended to be patient-friendly and include advice from health care professionals, including rheumatologists, psychologists and infectious disease experts.
“We are also offering our community members the opportunity to contribute their first-person experience of being in a high-risk infection group,” he said. “With our support, members of the GHLF community created the nationally trending hashtag on Twitter, #HighRiskCOVID19, and we are providing healthy, home-bound patients with the opportunity to advocate on behalf of the entire chronic disease patient population, for improved access to care.”
Ginsberg added that the foundation and CreakyJoints are also planning the creation of “living, digital” activities to strengthen the patient community, and help reduce stress and anxiety. Moreover, the nonprofit will be working to communicate with a variety of patient populations, and partnering with other patient advocacy groups, to make their resources available as widely as possible, he said.
Ginsberg encouraged rheumatologists to refer their patients to the support program, stating it will provide accurate and up-to-date information in a time when so many online searches — and the results they conjure — are driven by fear.
“Many rheumatology practices, organizations, hospital divisions and thought leaders have been sharing the program with their patients and the response has been very positive,” Ginsberg said. “We suggest that rheumatologists refer their patients to our patient support program because it is informed by science and puts facts ahead of fear. We also invite everyone to interact with us directly via social media. We don’t want anyone to feel alone, even if they are actually alone as we all isolate ourselves to flatten the curve to reduce transmission.” – by Jason Laday