A truly painless conversation at Le Pain Quotidien
I ask a lot of questions, partly because it’s my job but mainly because I’m curious about other people and what makes them tick. So when I sat down with Seth Ginsberg recently, I probably asked him more questions than he was expecting, but certainly not more than he could handle.
We took a corner of the communal table at one of many Le Pain Quotidien cafés in New York City. Seth had the vegetarian chili. (He wanted me to make that clear: vegetarian chili.) I had a cappuccino that came in a bowl about the same size as Seth’s chili bowl.
We were there to talk about CreakyJoints in general and CreakyJointsPRO in particular.
CreakyJoints has been Seth’s project and passion for the past 15 years. It was all new to me. Naturally, I had questions. The first being: What’s this CreakyJoints organization all about?
The short answer is: CreakyJoints is an “Online Patient Community”—a forum and information exchange for anyone affected by arthritis in any form. That includes auto-immune diseases such as fibromyalgia, lupus, and gout.
More than 56,000 people are part of the CreakyJoints community. The number impressed me, until Seth pointed out that arthritis and its related conditions affect more than 50 million people in the United States alone. As a rule, I don’t do math, but even I could see the growth potential CreakyJoints has. And I’m not thinking merely of numbers...
“We call ourselves an Online Patient Community, but CreakyJoints lets us see who these ‘patients’ are as people,” Seth explained.
That’s when he started to tell me about CreakyJointsPRO—the new initiative that will connect the CreakyJoints community with scientists, physicians, universities, hospitals, and premier research institutions. It will take all the individual voices in the CreakyJoints community and turn them into a chorus that will be heard.
“What’s the difference between CreakyJoints and CreakyJointsPRO?” I asked.
“CreakyJointsPRO is an opt-in participatory program,” Seth said. “When you register, you agree to participate by answering questions from time to time. The ‘PRO’ in CreakyJointsPRO stands for “Patient-Reported Outcome.”
“What does that mean?” I asked.
“A Patient-Reported Outcome is information gathered directly from individuals. That would be ‘You,’ a person living with arthritis. You say what hurts, how long it’s been hurting, and what you and your physician have been doing to relieve and heal the hurt. Another example: You report on the care you’ve received, how effective it has been, and how easy (or difficult) it was to obtain.”
“Report?” I asked. “What kind of report?”
“You’ll answer a few questions,” Seth said.
“Just questions?” I asked. “No physical examinations or tests?”
“Just questions,” he said. “These are surveys, not clinical trials.”
“How long does that take?” I pressed. “People are busy. It’s hard to convince them to devote time to extra stuff.”
“Five minutes a day,” he countered. “People will take five minutes a day to participate in the process. To answer questions about their arthritis and their treatment. It’s non-invasive, non-intrusive, nothing is mandatory. And...” He paused to order the coconut macaroons for dessert. “I know people will feel good about doing something to help others with similar and related conditions.”
In the second part of this article, Seth tells me what CreakyJointsPRO wants to know, PLUS the macaroons arrive...