It takes a great deal of time and money to produce clinical practice guidelines for rheumatic diseases. No matter how well a treatment inhibits inflammatory cytokines, it won’t lower disease activity without one essential factor: patient compliance.
“You can’t propose a treatment algorithm in your research that no patient would actually use,” says Veena Ranganath, MD, a rheumatologist who conducts rheumatoid arthritis (RA) research at the Ronald Reagan Medical Center at the University of California, Los Angeles. Patient input in the grant-development stage, as well as during clinical trials, can help shape rheumatology research and lead to cohesive physician–patient-oriented research, she notes. “If researchers propose major changes to the standard-of-care manner of treating rheumatology patients, it is important to consider feasibility and patient buy-in to the research concept.”
The Lived Experience
Patients are playing a more active role in rheumatology research than ever before. As highly valued stakeholders, patient advocates serve on grant review panels, guidelines development task forces and committees that craft meaningful outcomes measurement tools.
The American College of Rheumatology (ACR) Policy and Procedures Manual for Clinical Practice Guidelines, published in January 2015, states that at least one knowledgeable consumer and one patient advocate must be included in guideline project development groups.
In 2010, the European League Against Rheumatism (EULAR) passed recommendations to include patients in rheumatology research and published a set of reference cards to help researchers and patients work together more effectively. The introduction to the cards states that patient stakeholder engagement “improves both the methodology and outcomes of the research, and offers invaluable insights. Contributions by patients to the design, implementation and evaluation of research leads to effectiveness, credibility and often to more cost efficiency as well.”
It is patients’ “lived experience” with rheumatic diseases that helps steer research in practical directions, says leading patient advocate Amye Leong, an RA patient who has become extensively involved in rheumatology research through such organizations as Outcome Measures in Rheumatology (OMERACT), the American College of Rheumatology, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), and the Patient-Centered Outcomes Research Institute (PCORI).
“I’m stuck with this disease for the rest of my life,” says Ms. Leong, who is the founder and chief executive officer of Healthy Motivation, a health education and advocacy consulting firm based in Santa Barbara, Calif., and Paris, France. She was diagnosed with RA at 18, and went from living on Social Security disability to becoming a respected arthritis speaker and educator, and serving on the NIAMS Advisory Council and its Clinical Trials Grant Review Panel. “Patients can help researchers better understand the orders of importance of measurable outcomes. Every decision that researchers make could change the course of my disease.”