CreakyJoints and Global Healthy Living Foundation offer advocacy, education and community
Seth Ginsberg was lying awake in his college dorm room at 3 a.m., feeling alone and unhappy, when he got an idea that would change his life.
Ginsberg, who had been diagnosed with spondyloarthritis at 13 years old and had been active in the Arthritis Foundation as a teen, felt disconnected from the sense of purpose and community he had found in this volunteer work.
“When I went away to college, I was feeling a little bit unfulfilled,” Ginsberg said. “It was literally 3:00 in the morning during the second week of school, and I was in my bunk bed, miserable and alone.”
At some point, Ginsberg decided to get out of bed and send what would turn out to be a fateful email.
“I emailed my former internship boss [entrepreneur Louis Tharp] and said, ‘There has to be a way to bring people together in a positive environment to share strength and experience,” Ginsberg said. “Fortunately, he wrote back a few hours later and said, ‘How about we do this together?’”
That afternoon in 1999, www.CreakyJoints.org became a website and Ginsberg’s early-morning musings grew into an online patient community that engages and assists more than 100,000 patients.
“We’ve obviously evolved a bit, but CreakyJoints remains the bedrock of patient community for people with all forms of arthritis,” Ginsberg, now the president and co-founder of the organization, told Healio Rheumatology. “It is a great resource for patients, their families and the public.”
Knowledge and support
Ginsberg explained that CreakyJoints, which is part of the nonprofit Global Healthy Living Foundation, has four key objectives for helping patients with arthritis. The first, he said, is education and understanding regarding the diseases.
“This is about helping people understand what is going to happen, why things are happening and what patients can do to manage what is happening,” Ginsberg said. “CreakyJoints began publishing patient guidelines, literally lay translations of treatment guidelines, written in plain English, for the various diseases,” he said. “Then, we present the information in a real-world context — what it means to have these diseases in the real world with the insurance you have or with no insurance.”
Another educational initiative that was an offshoot of CreakyJoints is Healthy Biologics, a campaign to educate patients about biologic medications and biosimilars.
“What we’re trying to do is help inform the public, but most importantly our community and patients who are on biologics, about what is going on, what are the policy, medical and access issues,” Ginsberg said. “All of this is with the goal to allay concerns and realize the promise of biosimilars.”
Support and coping are also major components of CreakyJoints, which offers an opportunity to connect and share experiences with other patients with arthritis. Ginsberg said the group has used social media to facilitate this important and ongoing conversation.
“We have an awesome presence on social media. People are getting involved and helping each other out,” he said. “Some of the best parts of my day are when I go check the comments on a CreakyJoints post on Facebook. It is honest, down-to-earth feedback between patients. Support like that is important.”
Advocacy and research
Another aspect of the mission of CreakyJoints is advocacy. According to Ginsberg, helping patients get access to care is a different scenario than it was when CreakyJoints was founded, but the organization has kept up with the times. He said CreakyJoints is active in 50 states and Puerto Rico in terms of patient advocacy efforts and addresses access-to-care issues at a federal level in Washington.
“When you have a chorus as large as ours and have the ability to use the internet the way we do, you can be specific and targeted,” he said.
The group’s fourth area of focus, patient-centered research, has been realized through CreakyJoints’ paren nonprofit Global Healthy Living Foundation with funding from the Patient-Centered Outcomes Research Institute, Ginsberg said. Support from PCORI has enabled the development of ArthritisPower, an app built to collect the patient-reported outcomes of people with arthritis.
“It also helps patients manage their disease, because when the patient logs how they’re doing or they take an assessment or survey, they will have access to information in real time on how to feel better [and] what it means,” Ginsberg said, “This is patients driving the research agenda [and] patients participating in the research process.”
Ginsberg envisions more exciting things to come for ArthritisPower.
“The future of ArthritisPower is you log how you’re doing, you track your outcomes with the app and it’s synced with your medical records,” Ginsberg said. “It is tied right in to your doctor. It allows for you and your doctor to manage your disease with absolute precision and responsible scrutiny to make sure you’re doing as well as you can be doing.”
Global Healthy Living Foundation
A few years after CreakyJoints was introduced, Ginsberg and Tharp recognized the need to create a nonprofit “umbrella” organization that would include CreakyJoints, as well as other disease-specific communities in other medical areas. From this realization came the Global Healthy Living Foundation (GHLF), a “disease agnostic” nonprofit that oversees various initiatives for these communities.
“GHLF has a focus on conditions like autoimmune and degenerative arthritis, migraines, high cholesterol, cardiovascular disease, chronic pain and vaccinations,” Ginsberg said. “GHLF serves many roles in different ways across all those diseases, depending on what is needed most.” Ginsberg emphasized that GHLF aims to support organizations for these diseases, rather than transform groups.
“We’re not here to reinvent any of those organizations, but we’re here to support them — sometimes behind the scenes, sometimes in front of the scenes,” he said.
Currently, GHLF is most focused on advocacy and oversees a campaign called the 50-State Network. This advocacy group enables patients with various conditions to speak out and advocate for themselves at state and national levels. The network provides patients with weekly legislative updates for their conditions and trains them to speak to the media.
“I think the opportunity here is for us to create the vehicle, within the health care conversation especially, to productively participate in the policy and regulatory conversation and to make their voices heard,” he said. – by Jennifer Byrne
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Disclosure: Ginsberg reports he is president of CreakyJoints and the Global Healthy Living.