“Involving patients as active partners in research is important because it opens opportunities for research to be more relevant, credible and accountable to issues that matter most to patients. Involving patients from the early stages of the research process can enhance the quality of research evidence, clinical practice and health outcomes,” says Ms. Leese. “In recent decades, an increasing body of evidence has shown discrepancies between what arthritis patients and health professionals prioritize as important outcomes.”
Ms. Leese is one of several researchers working with her institution’s Arthritis Patient Advisory Board launched in 2001. Both patients and researchers collaborate on a program called “It IS About Us,” and they “aim to develop a how-to manual that can guide patients and research teams or organizations in developing a practice of patient engagement in research based on patients’ perspectives,” says Ms. Leese. The patient participants mentor emerging researchers to develop better communication skills with patients in their work, she adds.
At UCLA, Dr. Ranganath has worked on a number of clinical research studies involving RA patients, including use of ultrasonography and magnetic resonance imaging to assess structural damage and inflammation. Rheumatology research should be driven by what may benefit patients the most, she says.
“If research is not applicable to the patient sitting in your clinic, then why do it?” says Dr. Ranganath. Patients help drive rheumatology research where it needs to go, she says. “Patient enrollment in early tumor necrosis factor inhibitor trials led to FDA approval of the first biologic drugs in RA. Now, rheumatologists have several medications to choose from to treat RA. Patients are extremely important in the research process.”
Many sources of rheumatology research funding, such as NIH or PCORI in Washington, D.C., require patient involvement as part of their grant criteria, says Dr. Ranganath. Researchers need to treat patients in their clinical trials as valued equals in the process.
“It should be a collaborative effort between the physician and the patient,” she says. Patients should not feel that they are in a passive role. “It is critical for the successful conduct of clinical research that there [be] trust between the patient and the rheumatologist. There should always be two-way communication.”
Patient engagement at every level of rheumatology research, from clinical trials for new drugs to international retreats formulating measurable outcomes, has greatly improved the quality of life for people with rheumatic diseases, says Cheryl Koehn, who has had RA for 27 years. In 2000, Koehn founded Arthritis Consumer Experts, a national patient advocacy group headquartered in Vancouver, B.C., Canada. Ms. Koehn has chaired the Canadian Arthritis Network’s Consumer Advisory Council, among other national leadership roles.