Huge arthritis study draws experts to begin tackling real issues
This week, nearly 200 people — including health care providers, policymakers, leaders of a variety of industries (including health services) and representatives of the arthritis community — came together in New York City to discuss ways to address key issues surfaced in the Arthritis Foundation’s Live Yes! INSIGHTS study.
Held on March 3, this unprecedented event offered attendees a first look at input collected from over 18,000 assessments submitted by adult patients nationwide through the Arthritis Foundation’s Live Yes! INSIGHTS study, one of the nation’s largest studies of its kind. The study leverages validated patient-reported outcome measures to provide ongoing, real-life data about the devastating human toll arthritis takes.
The initiative led to “A Mandate for Action,” a report that summarizes INSIGHTS findings collected over a yearlong period through October 2019. Patients from all 50 states participated in the assessment, which empowered them to lend their voices and share the challenges they face every day.
INSIGHTS LIVE participants learned about the study’s findings and engaged in in-person dialogue to help find solutions for the arthritis community. This unprecedented study further proves that arthritis patients deal with substantial pain and disability. Shaped by patients, it covers the things they ranked as most important, including diminished quality of life and mental health issues. Rising to the top: impaired physical function, chronic sleeplessness and fatigue, reduced work abilities, decreased family connectivity and increased depression. Arthritis patients also report big gaps in the health care they receive.
“The pain, hardship, isolation and marginalization of people with arthritis can no longer be ignored,” says Ann M. Palmer, Arthritis Foundation president and CEO. “We must make positive changes not only at the national level, but also build programs tailored to the needs of local communities, based on localized data. There are great disparities in the challenges people with arthritis face, from one area of the country to another, especially among lower-income patients and minorities.”
Results from INSIGHTS are being shared with decision-makers who can bring about the urgent changes that are needed. This week’s New York event was just the beginning of urging powerful leaders to join the fight and be instrumental in leading real progress.
Raj Karia, network leader of the Arthritis Foundation’s local leadership board in New York City and director of the Center for Clinical Research in Orthopedic Surgery at NYU Langone Health, kicked off INSIGHTS LIVE by encouraging participants to reflect on the realities of people living with arthritis. “Take a moment to imagine yourself in their shoes,” he said. “Consider how each of us — as business and industry leaders, policymakers, health care providers, patients and members of society as a whole — can work together to change the future for those who battle this serious, chronic disease.”
Celia Clark, another volunteer with the Foundation’s leadership board in New York who attended the gathering, said the study’s findings strike a chord. “Thirty-five years after my diagnosis, I am finally getting an idea of the emotional weight of this disease.”
The data was brought to life in a powerful way through the compelling personal story shared by Shannan O’Hara Levi and her husband, Dustin. Shannon, who has lived with juvenile idiopathic arthritis since the age of 3, talked openly about the challenges arthritis has created in the couple’s quest for a “normal life.” Fueling the INSIGHTS study are the thousands of personal stories like Shannan’s that make up the data.
Also attending the discussion was Kayla Amodeo, associate principal in policy practice at Avalere, who observed that “the data from A Mandate for Action helps complete the picture and validates what the Arthritis Foundation has been advocating for years.”
The conversation will continue at Live Yes! INSIGHTS LIVE discussions in several cities around the U.S. throughout 2020, as more concerned citizens gather to help figure out immediate and long-term solutions. But it’s not just a conversation; we’re walking the talk, putting meat on the bones and developing an actionable plan that will get the answers people with arthritis across the country want and need.
Meanwhile, YOU can be part of the solution. Read the report. And contribute to our continuing study and participate regularly, adding to this pivotal, real-time baseline of real-life experiences. Your voice counts. NOW is the time to change the future of arthritis. For today and for generations to come.