“It is still a challenge sometimes, because some researchers assume that patients ‘don’t know what I know.’ So we have an opportunity to teach researchers to refrain from dismissing the importance of patients’ experience,” says Ms. Leong.
Ms. Leong
At the 2002 OMERACT meeting, Ms. Leong and other RA patients shared their opinions on the importance of such outcomes as sleep and fatigue. OMERACT’s Patient Research Partners program continues to engage patients with researchers in developing new tools and recognizing areas of concern for rheumatic disease patients, such as tolerability of MRI scanning duration.
At the organization’s 2014 meeting, psoriatic arthritis patients participated in a working group to refine core responder indices for this disease. Across the research spectrum, patient stakeholder engagement is becoming more prevalent. The Food and Drug Administration Safety and Innovation Act (FDASIA), passed in 2012, requires patients to be involved in drug development. The FDA’s Patient-Focused Drug Development initiative includes a series of five meetings with patients to discuss the impact of disease on their lives. Patient-reported outcomes are now included in the current ACR/EULAR RA remission criteria, developed by a committee that included RA patients.
Both patients and researchers can learn from each other, says Ms. Leong. “There is room for developing an infrastructure or process for new researchers to learn how to engage patients and vice versa,” she says. “I have learned that so much good can come from articulating
the patient’s experience in the research discussion. We can influence how a researcher understands concepts based on lived experience.”
Guiding Emerging Researchers
Ms. Leese
Patient stakeholders continue to influence new research, says Jennifer Leese, a research trainee and doctoral student at Arthritis Research Canada in Vancouver, B.C., Canada. Her work includes evaluating new tools to support self-management by patients with musculoskeletal disease.
