The Patient as a Policy Factor

A Historical Case Study of the Consumer/Survivor Movement in Mental Health

One of the most striking changes in health care policy-making over the past 40 years has been the growing attentiveness to the voices of patients. This article traces the history of the consumer/survivor movement and analyzes its impact on the policy-making climate in the mental health field. Increasing attentiveness to the perspectives of consumers has been a reaction to policy failure and radical restructurings of the mental health system, the author argues. For example, the trend toward deinstitutionalization created a pressing need for new forms of community-based support systems for people with severe and persistent mental disorders.

Barriers still exist to effective consumer input. The input of consumers has been welcomed and acted on, but only to the extent that it serves the purposes of other, better-organized stakeholders. In addition, as consumers have taken on positions of influence, there has been greater conflict among representatives of different consumerist perspectives. Nonetheless, substantial consensus has emerged around key ideas such as self-determination as a core principle of treatment, the need for treatment plans that reflect individual patients' states of readiness to pursue treatment, and the need for integrated programs of community support. Some thoughtful and creative patient-centered innovations in care have emerged that deserve more attention.