Arthritis Foundation and Innovation and Value Initiative Release Paper Highlighting Patient Perspectives in Rheumatoid Arthritis
Alexandria, VA — November 1, 2021 — The Arthritis Foundation and the Innovation and Value Initiative (IVI) have partnered with people living with rheumatoid arthritis (RA) to publish a new report highlighting the need for healthcare research and value assessment that reflects patient experience and outcomes.
The paper, First-Hand Perspectives in Rheumatoid Arthritis, connects patient experiences with RA to research and value assessment questions that have not been fully considered. Through focus groups and in-depth interviews, themes that emerged include:
- Traditional clinical trials and research do not always capture the full complexity of living with RA, including comorbid conditions, fatigue, mental health, and the impact of hormonal changes.
- Access to effective treatment may be driven by insurance coverage or haphazard testing of treatments rather than by clinical guidelines.
- Costs related to RA include far more than direct medication costs and need to be captured.
- While RA is a progressive disease, people living with it are seeking independence and normalcy versus just symptom management.
“This project shines a bright light that the patient experience is largely absent from current research making the balance of treatment effectiveness and quality of life a game of trial and error for people living with RA,” said Anna Hyde, Vice President for Advocacy and Access at the Arthritis Foundation. “The current emphasis on patient-centricity and value in health demands that we must invest in painstaking work to understand priorities and impacts defined by lived experience. This paper is an important contribution to making measuring outcomes and impacts important to patients, families, and caregivers a national priority.”
The paper is centered on perspectives offered by four individuals living with RA who are co-authors. Stacy Courtnay, Lawrence Rick Phillips, Raquel Masco, and Shannon O’Hara Levi each share their experiences revealing the unmet needs of patients living with RA across clinical improvement, quality-of-life impact, and direct and indirect costs.
“For me, the side effects of not having enough treatment, or not having my experience taken seriously, are far worse than the side effects of the treatment,” said Raquel Masco, of of the paper’s co-authors. “I have walked into healthcare offices and had only one person really see me and the excruciating pain I was experiencing. People, even if they don’t look like they have a disability, want to be seen.”
Jennifer Bright, IVI’s Executive Director, said, “Available data frequently fails to represent real-world patient populations and elements that are important to those populations and not measured resulting in cost-effectiveness models and decisions that are insufficient and potentially biased. It’s our goal that this paper can help illuminate opportunities for future research and economic evaluation methods that better address patient diversity and the value factors important to them.”
Despite significant research on the treatment of RA, researchers need to make sure that patients are asked the questions that matter to them. The paper, which can be downloaded at https://www.thevalueinitiative.org/wp-content/uploads/2021/10/First-Hand-Perspectives-in-Rheumatoid-Arthritis_FINAL.pdf, serves a call to action for the research and patient community to shift the approach to bring lived experience into value assessment.
About the Innovation and Value Initiative
The Innovation and Value Initiative is an independent, 501(c)3 nonprofit research organization that puts patients at the center of value assessment to advance the science, practice, and use of all health technology assessments. Patient-centricity, transparency, and open-source modeling are hallmarks of IVI’s value assessment approach. IVI conducts and funds research to improve scientific methods for value assessment; utilizes its transparent open-source modeling so value assessments improve equitable resource allocation; and convenes decision-makers across the healthcare spectrum to improve how assessments are used in the real world.
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.