Alliance for Gout Awareness builds 'online home' for patient education, empowerment
The homepage of the Alliance for Gout Awareness offers a clear and simple message for visitors to the site: “Reducing stigma and empowering patients.” A cursory scroll through the materials and information available support this message, with most of the links and portals on the website providing patients and providers with tools to help meet these goals.
“As a diverse coalition of stakeholders, including members representing patients and health care providers in rheumatology, nephrology, podiatry, infusion and pain, AGA advocates for appropriate care for gout and improved understanding of the disease,” Chris Parker, DO, chief of rheumatology at the Austin Diagnostic Clinic and medical advisor for the Alliance, told Healio Rheumatology.
Formed in early 2018, the AGA is primarily a patient advocacy organization, but Parker stressed that clinicians and patients alike can benefit from improved understanding of how to treat the disease.
Although AGA was formed relatively recently, Parker has been working in the gout space on a personal and professional level for decades. He and a patient advocate began donating time to the cause and holding free informational meetings as early as 2010. “Over time, this effort grew, and we formed a Facebook group, the Gout Support Group of America, with the aim of providing an online home for gout patients seeking information and community.”
The organization’s website offers some fast facts about gout and disease management. A “news” portal contains commentary and editorial features from clinicians, while the “resources” link has a cross-section of audio-visual content, including videos, patient guides and infographics that can be used to educate patients, caregivers and the public about this disease.
But Parker believes that the real heart of the organization lies in the community of patients who can connect via the website, the AGA’s Facebook and Twitter pages as well as in-person meetings. “Since AGA’s launch, we have hosted six Patient Empowerment Forums across the country,” he said. “These forums bring gout patients together with a successfully managed patient and a gout specialist for a conversation about living with and managing this disease.”
The AGA has 12 organizational members and also works with individual patients and providers. Membership is free, according to Parker. “Our aim is to work with any organization or individual passionate about improving care for patients,” he said. “Rheumatologists can engage with us in a number of ways: by helping develop educational materials, speaking at one of our events or sharing our AGA materials with their patients.”
Parker and the organizing members believe that it is critical that people living with gout hear appropriate medical information from providers who are experts on this disease. “Of course, we also welcome patient engagement,” he said. “Part of raising awareness and decreasing stigma around this disease comes from patients telling their stories.”
Patients can author guest blogs, participate in the in-person events or join patient forums. Getting involved is as easy as sending an email.
Looking ahead, the AGA will host six more patient empowerment forums in 2020. “We will also continue to produce materials that help patients manage their disease and reduce the stigma around gout,” Parker said. “Broadly, we look forward to continuing to work with patients, providers and the advocacy community in the coming years to improve gout care.” – by Rob Volansky
For more information:
Chris Parker, DO, can be reached at 1275 Pennsylvania Ave NW, STE 1100A, Washington, DC 20004; email: firstname.lastname@example.org.
Disclosures: Parker reports being on the speaker's bureau for Takeda Pharmaceuticals and Horizon Pharmaceuticals and receiving research grants from Ironwood Pharmaceuticals.