The motto “Nothing About Us Without Us” gained momentum through the disability rights movement in the late 1980s and early 1990s. It captures the spirit of the International Day for Disabled Persons and the programs adopted by the United Nations General Assembly to promote better understanding of the issues of oppression and empowerment of people living with disabilities, and it applies neatly to arthritis research, as well. It seems fitting that any project that aspires to serve patients, improve health, and prevent disability must involve those people in the project from the outset.
Last year I participated in the Summit on Standards for Arthritis Prevention and Care in Ottawa, Canada, an initiative sponsored by the Alliance for the Canadian Arthritis Program (ACAP). Intended to build consensus among representative members of the arthritis community (including consumer and professional organizations) to act on reducing the disparities in access to timely and effective arthritis care in Canada, the summit resulted in 15 standards that can be used by the ACAP, its member organizations, and individuals to lobby government and influence health policy and research funding with a single, consistent message aimed at improving health outcomes for people living with arthritis. The consumer voice at the summit was loud and clear, and influenced the direction, language, and tone of the priority standards; other stakeholder groups spoke loudly, too, yet an important summit outcome was consensus across all groups—achieved because each contribution was equally respected.
Central to ARHP’s purpose remains advancing health professionals’ knowledge and skills to improve patient health outcomes. Many ongoing activities contribute to this purpose, and within these activities we find instances of consumer collaboration. However, this is relatively rare, though the prevalence of arthritis means that there is almost always a “consumer” in the room.
Perhaps it’s time to consider more collaborations with people with arthritis. Inviting their perspective could inform priorities for research, practice guidelines, or any number of initiatives. We are gaining momentum. Information on building effective consumer-researcher partnerships, incorporating patient perspectives in outcome research, and similar topics has been presented at recent ACR/AHRP scientific meetings and at OMERACT. There are success stories, but there is more to learn.
Dr. Backman is president of ARHP, associate professor of rehabilitation sciences at the University of British Columbia, and a research scientist at the Arthritis Research Centre of Canada in Vancouver.
