The user perspective on managing for health outcomes: the case of mental health

Abstract

The Department of Health has placed great importance on evidence-based purchasing rooted in the assessment and measurement of health outcomes. This paper critically examines the conventional clinical effectiveness approach and argues for the integration of a user perspective in defining and determining health outcomes. Some conceptual issues around user involvement in mental health are considered first. Then we draw upon research with users and carers of a community orientated acute mental health service to examine users conceptions of outcomes. It is argued that incorporating a user perspective on outcomes has to involve a consideration of the entire course and experience of mental illness, i.e. the meaning to users and significant others of “becoming” and “being ill”. The paper relates users' perceptions of positive outcomes to their sense of self-management of their illness. Thus, a positive user-centred service response, when help is sought from mental health professionals, is one which both acknowledges that self-managing strategies are no longer sufficient, while also seeking to understand the user (and carer) perspective of the onset, course and meaning of the illness. Moreover, it conceptualizes outcome not as a single entity, e.g. changes in behaviour, but in relation to needs viewed holistically and whose specific features change with the course of the illness. Finally, it challenges the over-simplistic concept of consumerism in health, based on securing feedback about patient satisfaction with services. Rather, it argues for an approach to service provision which combines user understandings of illness and coping strategies with the skills and interventions of professionals. Thus, it is not simply a question of professionals keeping users informed about treatment options but of actively seeking and taking into account the user perspective on their illness.