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