Raising the Standard: Practice Guidelines and Consumer Participation

Clinical practice guidelines are increasingly affecting the quality of health care, and have the potential to affect the availability of health care options for consumers. Deciding what guidelines will cover, how they will be developed and what they will say are, therefore, issues in which consumers have a considerable stake. While there is a growing acknowledgement of the need to involve consumers in guideline development, the reality can fall far short of the rhetoric. This article advocates the use of three types of strategies in combination to enable better consideration of consumers' views in the guideline development process: the involvement of accountable consumer representatives in group decision making, community consultation and the use of research literature describing people's experiences. A framework for assessing the level of consumer participation in an activity is suggested. It is argued that if consumer involvement is to successfully raise the standard of health care guidelines, then the standard of consumer participation itself needs to be raised.