Responding to the Patient Voice – Improving Outcomes and Care for People Living with Arthritis

The Arthritis Foundation, Trio & ARN announce collaboration to collectively respond to the patient voice as reported by the Live Yes! INSIGHTS study.

Louisville, CO – April 28, 2021 - The Arthritis Foundation, Trio Health (Trio), and American Rheumatology Network (ARN) announce a collaboration to collectively respond to the patient voice as reported in both the Arthritis Foundation’s Live Yes! INSIGHTS study and Trio-ARN’s clinical insights from more than 370,000 rheumatology patients. The recent Live Yes! INSIGHTS study revealed a health crisis – the reality of a disease significantly impacting overall quality of life, causing excessive and near-constant pain, and patients reporting a desire for improved quality of care. These findings align with what is being observed real time within Trio-ARN’s clinical database, further highlighting gaps in treatment and care. The time is now to evolve the current industry standards that require all stakeholders to become more aware and digitally tech-enabled, to drive this change.

“100% of patients reported pain – the kind of pain that causes constant fatigue, significantly disrupts sleep and cannot be ignored. Two-thirds found it difficult to participate in family activities and experienced feelings of anxiety and/or fear. “Our data has uncovered that limitations in our health care system and lack of scientific breakthroughs are causing patients to “settle” for a life filled with pain and unmet needs.” Ann M. Palmer, Arthritis Foundation CEO and President.

According to the Live Yes! INSIGHTS study, 93% of arthritis patients report that it is extremely important to get the help they need at their healthcare provider’s office, yet only 57% reported getting the help they needed. Trio Health, the Arthritis Foundation and American Rheumatology Network are partnering to identify and develop tools to improve the interaction between the patient and the physician to enhance clinical outcomes.

In ongoing studies by Trio and ARN, who joined together in 2019 with a goal of using the power of data and analytics to improve patient outcomes, results indicated that discontinuation of therapy was only aligned with disease assessments half of the time, suggesting that other factors not represented fully in these disease assessments are important in defining treatment success. Standard disease assessment tools - RAPID3, which uses only patient reported measures, and CDAI, which merges provider and patient reported measures - were often contradictory. Together, these results imply that disease control looks very different from the patient perspective compared to results based on standard clinical assessment.

Though many therapeutic options exist for people living with rheumatic diseases, a limitation in current care is maximizing the benefit from each therapy exposure. An assessment by Trio Health of ~40,000 discontinued treatment episodes found that patients often stopped therapies before adequate time had passed to determine the treatment’s effectiveness. In more than half of these cases, treatment stopped for reasons considered to be manageable – e.g., general body stiffness, intermittent nausea, anxiety, pruritus. “The default approach when issues arise seems to be to switch treatment – unfortunately, for many patients the ‘next’ option does not resolve the problem, as patients often have recurring issues even across different drug classes.” Colin Edgerton, M.D., Executive Chairman ARN. “Understanding and integrating the patient voice is critical to manage the challenges and maximize the benefit of each therapy.” commented Brent Clough, CEO of Trio Health.

Trio has developed a national database with over 156,000 drug episodes that have been categorized based on the reasons for discontinuation. Combining insights from the patient as to why they stop therapies with the clinical measures collected during the care process, Trio is able to observe and place in sequence the potential hurdles undermining therapy benefit. The early hurdles are those that are largely manageable. To support manufacturers in the development of new therapies, ARN has also launched ARN Clinical Research to identify and connect patients to clinical trials.

Current disease assessment measures need improvement. These tools are overdue for a digital refresh that would provide daily ‘data points’ uploaded directly to physicians’ records. Trio seeks to partner with a tech-based app developer to transform the old standard measurement tools into a new, real-time digital reality. “The ARN-Trio collaboration provides a unique clinical ecosystem offering real-time access to rapidly test and refine data driven solutions.” Michael Cooper, ARN CEO.

Education is critical! Helping patients better understand their current therapy (efficacy/safety/tolerability information) along with information to compare against future therapy options could help patients self-advocate with their physicians. To improve persistency and adherence on therapy requires better awareness between the physician and patient, in lieu of the current prevalence of drug switching.

The information gathered from both the Arthritis Foundation INSIGHTS program and the Trio-ARN partnership highlights the importance of starting with the patient voice. Through this partnership, the Arthritis Foundation, Trio Health and the American Rheumatology Network will leverage clinical data analytics, hundreds of thousands of patient voices and technology-enabled solutions to empower doctors and patients to work together to significantly improve pain management and quality of care.

About the Arthritis Foundation

The Arthritis Foundation is fighting for all people who live with arthritis. As a Champion of Yes, it’s the Arthritis Foundation’s mission to turn the obstacles arthritis causes into opportunities. The Arthritis Foundation champions life-changing solutions and medical advancements, and it also provides ways for people to connect, break down barriers in health care and join the fight for a cure – uniting hearts, minds and resources to change the future of arthritis. To join the fight to cure arthritis, visit arthritis.org.

About Trio Health

Trio Health’s mission is to improve the quality of care and patient outcomes by coordinating the efforts of all patient care stakeholders. Their first-of-its-kind Multi-Disease Platform (MDX) tracks patients throughout the course of their treatment, giving biopharmaceutical companies, specialty pharmacies, and physicians access to information and opportunities that simply don’t exist anywhere else. Learn more at www.triohealth.com.

About American Rheumatology Network

American Rheumatology Network (“ARN”) is a physician led and owned organization committed to improving healthcare by empowering independent rheumatology practices across the nation. Through our network, physicians and practice administrators have access to best business practices, innovative practice performance technology, differentiated pharmaceutical contracts, and value-based treatment pathways. For more information, please visit our website: americanrheum.com.

For Trio Health:

Ramita Tandon

[email protected]

I Want to Contribute
I Need Help
  • Donate

    Donate

    Every gift to the Arthritis Foundation will help people with arthritis across the U.S. live their best life.

  • Volunteer

    Volunteer

    Join us and become a Champion of Yes. There are many volunteer opportunities available.

  • Live Yes! INSIGHTS

    Live Yes! INSIGHTS

    Take part to be among those changing lives today and changing the future of arthritis.

  • Partner

    Partner

    Proud Partners of the Arthritis Foundation make an annual commitment to directly support the Foundation’s mission.

Donate


Ways to Give

Every gift to the Arthritis Foundation will help people with arthritis across the U.S. live their best life. Whether it is supporting cutting-edge research, 24/7 access to one-on-one support, resources and tools for daily living, and more, your gift will be life-changing.

Make a Donation

Help millions of people live with less pain and fund groundbreaking research to discover a cure for this devastating disease. Please, make your urgently-needed donation to the Arthritis Foundation now!

Become a Member

Become an Arthritis Foundation member today for just $20 and you'll receive access to helpful tools..... and more. 

Make a Honor or Memorial Gift

Honor a loved one with a meaningful donation to the Arthritis Foundation. We'll send a handwritten card to the honoree or their family notifying them of your thoughtful gift.

Gift Planning

I want information on ways to remember the AF in my will, trust or other financial planning vehicles.
 

Volunteer


Volunteer Opportunities

The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community. We can only achieve these goals with your help. Strong, outspoken and engaged volunteers will help us conquer arthritis. By getting involved, you become a leader in our organization and help make a difference in the lives of millions. Join us and become a Champion of Yes.

Become a Volunteer

More About Volunteering

Live Yes! INSIGHTS


Give Just 10 Minutes.

Tell us what matters most to you. Change the future of arthritis.

By taking part in the Live Yes! INSIGHTS assessment, you’ll be among those changing lives today and changing the future of arthritis, for yourself and for 54 million others. And all it takes is just 10 minutes.

Your shared experiences will help:

- Lead to more effective treatments and outcomes
- Develop programs to meet the needs of you and your community
- Shape a powerful agenda that fights for you

Now is the time to make your voice count, for yourself and the entire arthritis community. 

Currently this program is for the adult arthritis community.  Since the needs of the juvenile arthritis (JA) community are unique, we are currently working with experts to develop a customized experience for JA families. 

How are you changing the future?

By sharing your experience, you’re showing decision-makers the realities of living with arthritis, paving the way for change. You’re helping break down barriers to care, inform research and create resources that make a difference in people’s lives, including your own.

Get Started

Partner


Meet Our Partners

As a partner, you will help the Arthritis Foundation provide life-changing resources, science, advocacy and community connections for people with arthritis, the nations leading cause of disability. Join us today and help lead the way as a Champion of Yes.

Trailblazer

Our Trailblazers are committed partners ready to lead the way, take action and fight for everyday victories. They contribute $2,000,000 to $2,749,000

Visionary

Our Visionary partners help us plan for a future that includes a cure for arthritis. These inspired and inventive champions have contributed $1,500,00 to $1,999,999.

Pioneer

Our Pioneers are always ready to explore and find new weapons in the fight against arthritis. They contribute $1,000,000 to $1,499,999.

Pacesetter

Our Pacesetters ensure that we can chart the course for a cure for those who live with arthritis. They contribute $500,000 to $999,000.

Signature

Our Signature partners make their mark by helping us identify new and meaningful resources for people with arthritis. They contribute $250,000 to $499,999.

Supporting

Our Supporting partners are active champions who provide encouragement and assistance to the arthritis community. They contribute $100,000 to $249,999.