Patient voices are critical to finding a cure for OA and other forms of arthritis. That’s the message Arthritis Foundation Osteoarthritis (OA) Programs Director Angie Botto-van Bemden, PhD, is sharing at the 2019 annual European Congress of Rheumatology (EULAR) in Madrid, June 12-15.
More than 16,000 delegates from around the world are expected to attend. Her message is more important than ever because many organizations and regulators are already shifting to approval of research programs and medicines only if patients have been included in the design of trials and the development of new treatments to help determine benefit versus risk ratios.
“People with OA should be able to influence the direction of research that have a direct impact on their well-being and on their lives,” explains Dr. Botto-van Bemden. “The biggest challenge for patient research partners, as well as for researchers, is to engage in dialogue and create sustainable partnerships that assure adequate access to the unique knowledge from patients’ experience. Our goal is to incorporate the patient’s voice to create effective patient partnerships.”
In addition to meeting with many key global OA research partners, Dr. Botto-van Bemden will present the results of the Global Osteoarthritis Patient Perception Survey (GOAPPS) — the first global survey of its kind to directly compare Quality of Life (QoL) in OA patients in the same survey across different languages and cultures. Arthritis Foundation-affiliated OA patients were among more than 1,500 patients from English-, Spanish- and Italian-speaking countries who responded to the survey. She will also present results from the Global OA Management Begins With Quality of Life Assessment in Knee OA Patients: A Systematic Review study, which reported QoL results for patients with knee OA and confirmed that specific individual factors, such as gender, body weight, exercise, mental health and education, can influence QoL and treatment outcomes for knee OA patients.
The Arthritis Foundation is one of the largest nonprofit arthritis advocacy and research organizations in the world, fighting for patient voices to be heard. We are also a listening organization. From the Foundation’s 2017 OA Patient-Focused Drug Development meeting and resulting Voice of the Patient report to our more recent global efforts to understand what patients think is most important to OA management, we continue to listen and represent patients. The Arthritis Foundation collaborates with many OA patient advocacy organizations worldwide to improve management of the disease in a way most meaningful to patients.