Involving citizens and patients in health research

The Canadian Institutes of Health Research's (CIHR), Canada's premier health research funding agency, is moving forward in realizing a more systematic, ongoing integration of citizens' input in priority setting, governance and funding programs and tools. In 2008, the Canadian Institutes of Health Research (CIHR) developed a Framework for Citizen Engagement. This Framework establishes guidelines for implementing a more systematic approach to consulting and engaging citizens, such as in assessing the merit and relevance of research applications, developing strategic plans, setting research priorities and for strengthening their role on CIHR's governance committees. This paper describes the current context for public consultation in Canada's federal health care system, the new CIHR citizen engagement framework and discusses citizen engagement activities and efforts undertaken by CIHR institutes and branches. It reviews the methods used by CIHR to engage citizens in four key focus areas: 1. Representation on CIHR's Boards and Committees; 2. Corporate and Institute strategic plans, priorities, policies, and guidelines; 3. Research priority setting and integrated knowledge translation; 4. Knowledge dissemination and public outreach. In discussing CIHR's experiences, the paper identifies some of the challenges and benefits of engaging citizens in CIHR's research processes, including participating in decision making and informing strategic priorities.