It has been my distinct pleasure to work with consumer collaborators—people living with arthritis—on research projects, advisory boards, and review panels, in consensus meetings to establish research agendas, and as co-educators in health professional programs. Those I work with have chosen the term “consumer collaborator” to reflect their contribution to and eventual use of our partnerships, although others might call them patients or clients.
I learn a lot from consumer collaborators.
This differs from what I learn from patients, students, or study participants, although I learn a lot from them, too. The relationship with consumer collaborators is different—they are a partner on a project team, equally contributing to establishing educational priorities, selecting a research direction, or resolving issues that threaten a successful project outcome. I focus on consumers as collaborators in research-related endeavors.
Consumer collaborators help refine our team’s research agenda, ensuring research questions are relevant and reflect outcomes that matter to people living with arthritis. They have taught me new techniques in advocacy, perseverance, and goal attainment. Some demonstrate such gracious and eloquent communication that, I hesitate to admit, they’ve taught me better communication skills.
As I participate in various parts of the research enterprise, I’m struck by the range of responses to consumer collaboration: Some academics embrace the opportunity as nothing more than common sense, and others avoid it with the view that it is impractical for “untrained” people to participate in sophisticated activities like grant review panels. Yet people with arthritis bring diverse experiences to any project, and collectively bring a patient perspective that would otherwise be absent from those deliberations, enriching the discussion and decision-making process. Consumer collaborators on a peer review committee? Why not? Though not a peer in the traditional sense, they represent the end-user of study results, and in some cases the donor or taxpayer who funds the research.
Meaningful consumer collaboration is not a new idea. Those committed to the fundamental philosophy underlying participatory action research or patient centered practices have been working with people living with chronic illness for decades. Consumer collaborators are genuine participants in establishing important research questions, contributing to elements of study design, pointing out flaws in implementation plans, interpreting findings from a unique perspective, and disseminating the results, thus expanding the audience for research. In a recent research team discussion, one of the consumer collaborators shared a catch phrase, “nothing about us without us,” reflecting her peer group’s commitment to supporting active consumer participation in all levels of arthritis research activity.
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.
