Until now, funders have not had broad-based conversations with the arthritis community—patients, caregivers, and clinicians—to find out what matters most to them. Patients and caregivers have not historically had a platform to engage with researchers, funders, and others to address this disparity, and to share, in their words, their greatest hopes and greatest concerns about arthritis. Similarly, clinicians would benefit from having a neutral platform in which to share their greatest obstacles and ideas for improving treatment and health outcomes for arthritis patients.
Through Matching Actions to Needs, the Arthritis Foundation will bring the patient voice to the forefront, unearthing the issues most important to the arthritis community. A series of nationwide listening sessions will explore challenges and barriers that arthritis patients, caregivers, and clinicians face in treating arthritis. The sessions will gather insight into a number of topics, including the ways in which the arthritis community wants to participate and receive findings on patient-centered outcomes research.
Patient and stakeholder engagement is critical to this project. Patients and healthcare providers will drive the project as members of the advisory team, including the project lead who herself is an arthritis patient. Participants will represent a diverse group of patients, caregivers, and clinicians with diversity in age, gender, and arthritis diagnosis. They will be engaged throughout the entire process, including planning, recruitment, implementation, and report finalization. Patients will help formulate listening session questions, recruit other participants, facilitate listening sessions, and provide input on the results report.
Findings from the project will be synthesized and developed into a report that outlines and translates these issues into research questions and topics. The report will be available to participants and the larger arthritis community for feedback. The report will be utilized to better understand the patient experience and illuminate gaps. The Arthritis Foundation will use findings to infuse a patient-driven approach to planning and prioritizing arthritis research, research funding, and program decisions.