Lessons learned in using community-based participatory research to build a national diabetes collaborative in Canada.

BACKGROUND Using community-based participatory research (CBPR) principles, the Canadian First Nations Diabetes Clinical Management Epidemiologic (CIRCLE) study documents the current clinical management of type 2 diabetes (T2DM) and complications in 19 partnering First Nations (FN) communities. OBJECTIVES To outline the lessons learned in developing and fostering community health partnerships, and demonstrate the feasibility of using CBPR in multisite research at a national level. METHODS Investigators developed investigator-FN community partnerships from seven Canadian provinces, and research assistants were hired from each community to facilitate data collection. Research assistants randomly selected patients from each community's diabetes registry, and audited the charts of consenting patients from 2006 to 2009 for diabetes indicators in accordance with national diabetes guidelines. LESSONS LEARNED Lessons learned in using CBPR on a national scale are outlined by highlighting challenges and facilitating factors associated with (1) building collaborative relationships, (2) culture and ethics, (3) collaboration and partnership, and (4) innovative avenues of data management and dissemination. Lessons learned include the need for a flexible research agenda, clear and mutually agreed upon roles, partnership from all community levels including Elders, regional coordinators managing several sites, and wide-scale dissemination methods. CONCLUSION The CIRCLE national CBPR multisite collaborative is unprecedented in Canada, and provides a feasible model for other studies. Using CBPR on a national scale exacerbates challenges commonly faced with single-site or multisite research, but the benefits provided in developing partnerships based on mutual trust and goals makes it of great importance.