Consumers Add Perspective to Arthritis Research

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.