Introduction

Although involvement of the consumer is increasingly being advocated in health related research, it is not welcome universally. Furthermore, the underlying rationale is rarely made explicit. Policy makers, health care professionals, and researchers need to be clear about the benefits and ways of including lay perspectives and the criteria for evaluating these. Examples of lay involvement in setting research agendas,1 2 3 4 methodological debate,5 and specific projects4 6 4 are accumulating, but little clear evidence about the benefits and costs of different ways of incorporating lay input into health services research is available.

We outline two basic reasons for incorporating lay perspectives into research and discuss some common objections. A framework is offered to help clarify the dimensions of lay involvement in health research. We use the term “lay” to mean people who are neither health care professionals nor health services researchers, but who may have specialised knowledge related to health. This includes patients, the general public, and consumer advocates.

The origins of lay involvement

The current interest in incorporating lay perspectives into health services research reflects broad social and political trends and developments in health care that have involved some breaching of the boundaries between medical professionals and others. The assumptions that the “experts”–doctors and biomedical researchers—are the best judges of what research is needed and should be exempt from democratic accountability are questioned. In addition, theoretical and empirical work on the philosophy and sociology of science has shown that the culture and values of those involved can influence research and the knowledge derived from it.8 The relevance of much research that has been driven by narrow professional and academic interests is increasingly being questioned.9 10