Seth might have finished his chili, but I wasn’t done peppering him with questions about CreakyJointsPRO. He said it was a database of Patient-Reported Outcomes. He said the information would come from people who agreed to answer questions about their arthritis, their treatment, their habits, their lives...
I looked at him skeptically and asked, “What kinds of questions are you going to ask? You can’t expect people to reveal sensitive information about themselves.”
“No information that a person is not comfortable sharing,” Seth said. “We will ask for standard health and demographic information. And in some cases we may ask for volunteers to provide real-time information by wearing a passive-monitoring device. But this is only for those people who might be interested in tracking their health at that level.”
“You want basic information like age and gender,” I said, clarifying for myself. “And I guess you need to know where someone lives because that makes a difference in the type of life they lead.”
“Now I have to ask you this because it’s top-of-mind for everyone these days: Will you ask for financial information?”
“We will not collect information that could lead to identity theft,” he said decisively. “And we never ask for financial information.” Seth glanced at my notebook. “Make sure you write that. It’s important. We never ask for financial information.”
I wrote it in my notebook because, he’s right, it is important.
“We’re building a database,” Seth explained. “In fact, CreakyJointsPRO is the arthritis component of a much larger project that will cover a number of chronic diseases. We want the research community to know what’s going on in chronic diseases. The database will give them the big picture of who the people in the arthritis community really are.”
I gave that some thought: A doctor or researcher at a given hospital or university might have access to hundreds of people they can survey for information. But all of those people probably live in the same area and could very well receive their care at the same place. They represent a limited sample of the arthritis universe.
CreakyJointsPRO wants to include everyone.
Collect this type of information from the entire CreakyJoints community—56,000 strong and growing—and you have an incredible resource and a voice for the arthritis community that’s never been available at this level before.
“By crowdsourcing information about how people are dealing with their arthritis at such a large scale, we can really figure some things out,” Seth added. “This will help make the scientific and medical communities more responsive to our needs as patients.”
The coconut macaroons came and Seth offered me one. I declined. (Who am I kidding? I love macaroons. He probably noticed me eyeing them.) While he sliced into one with his fork, I took the opportunity to press a little more about CreakyJointsPRO.
“People are naturally skeptical,” I reminded him. “They’ve heard that ‘your vote matters’ stuff before. You’ll have to overcome their skepticism. How do you do that?”
“We released our Barriers to Care study a few months ago,” Seth said. “That’s the first of what will be many studies based on information provided by the CreakyJointsPRO community. People will see our partners in the research community pursuing studies informed by experiences and concerns voiced by CreakyJointsPRO.”
Seth paused while I wrote a few lines in my notebook, then he said, “CreakyJointsPRO gives people a chance to ask questions and participate in discussions, so we know what’s impacting them and we can do something about it.”
So, CreakyJointsPRO will raise awareness among scientists, researchers and physicians about issues facing the arthritis community—things they might not know about (or know enough about); things they might decide to investigate and call attention to through research and study. Interesting.
“You mentioned ‘partners.’ Who are they?”
“Our lead partner for CreakyJointsPRO is the Comprehensive Arthritis, Musculoskeletal and Autoimmunity Center (CAMAC) of the University of Alabama at Birmingham School of Medicine. We also work closely with the Hospital for Special Surgery in New York; NYU Langone Medical Center Hospital for Joint Diseases; and University of California, San Francisco,” Seth said, adding, “But remember, CreakyJointsPRO is part of a nationwide database available to accredited research institutions around the world.”
“So the potential reach is enormous,” I said.
“The potential reach is enormous,” he agreed.
To participate in CreakyJointsPRO, join the CreakyJoints community http://www.creakyjoints.org/user/register then click through for the CreakyJointsPRO registration survey.
Want to know more? Click here for the CreakyJointsPRO FAQ. http://www.creakyjoints.org/creakyjoints-pro/creakyjoints-faq