Why

Introduction

Why do consumers get involved?

Bastian (1998) suggests that consumer activism in health derives from six broad strands:

1. Groups that form around local geographical interests, generally in response to a single issue of local public concern
2. Groups that form among people sharing the same health condition or experience
3. Groups that are forged among people with a shared experience of being harmed by a product (or by people advocating a particular treatment or practice)
4. Groups that protest particular practices or developments on an ideological basis
5. Population groups with a shared identity who came together to represent their concerns and interests
6. Generic groups and coalitions that are formed to advocate on behalf of the whole population (Bastian, 1998)
   Bastian H. 1998, "Speaking up for ourselves: the evolution of consumer advocacy in health care", International Journal of Technology Assessment in Health Care 14(1):3-23.

Why is it a good idea to involve consumers?

"With the rise of consumer movements worldwide, funding bodies, whether governmental or private, have come to expect and require consumer representation. But satisfying the terms and conditions is not the only reason for including consumers. The sharing of perspectives of providers, researchers, and consumers can enrich a project. Although this sharing is an important aspect of consumer involvement, it should be remembered that for consumers the most important thing is to be listened to by providers and have their views taken seriously. " (VMIAC, Developing effective consumer participation in mental health services. The Report of the Lemon Tree Learning Project p. 66)

Consumer and carer participation can occur across many levels.

1. Participation in treatment and care
2. Consumers employed by services as consultants and advocates
3. Participation in service delivery and evaluation
4. Participation in policy and planning
5. Participation in education and training
6. Participation in staff recruitmen.t

Whilst these levels represent the opportunities for consumer and carer participation, in practice participation does not occur in all of these areas all of the time. The relationship between attitudes and consumer and carer participation is circular: inappropriate attitudes can act as a barrier to genuine participation; when participation is lacking, inappropriate attitudes are not challenged or changed. (Enhancing relationships between health professionals and consumer and carers, MHCA 2000 p. 22)