Consumer participation in research and health care

Making it a reality

The quality and relevance of much clinical research fall short of patients' needs.1 Although there are many reasons for this, one is that clinical research has been delegated largely to the pharmaceutical industry, whose main motivation is its own economic welfare.2 Another reason is that research priorities do not flow from a transparent process where the views of all the relevant stakeholders are equally considered. With very rare exceptions—the case of the AIDS advocacy movement is an exemplar—patients and consumers have no voice in how research is prioritised, funded, and monitored. Indeed, the presence of lay people on research ethics commitees is common but there is a widespread belief that they are rarely influential.3 Even among progressive scientists and health professionals, a paternalistic attitude still prevails. They do not believe that patients and consumers can improve the decision making process as, they say, consumers lack the necessary knowledge and skills. But successful efforts to shift …