Developing inclusive partnerships: user-defined outcomes, networking and knowledge--a case study.

Abstract

Two major developments have been associated with the reorientation of United Kingdom health and social care policy and provision in recent years, placing a new emphasis on: quality and 'outcome' measures; and service user (and public and patient) involvement. These issues have become central to health and social care, representing expressions of the shift in political and ideological interest in public policy. However, these two strands of development have tended to be treated as discrete discourses and have developed separately in policy. Nevertheless, it can hardly be assumed that what policy makers, service planners, providers and purchasers would value and prioritise as good quality would necessarily coincide with what service users would want. Developing effective partnership working needs to go beyond considerations of organisations and professional groupings, and fully involve service users as one of the key stakeholders. This paper describes the findings of three projects undertaken by Shaping Our Lives. These studies confirmed that service-user concepts of outcomes and quality may differ significantly from those currently employed; moreover, service users are able to offer a complex and sophisticated model of what outcome measures might look like if they were centrally involved in their definition and application. Nevertheless, service users currently have little impact in defining and influencing quality outcomes. The projects also highlight the importance of networking and knowledge sharing for service users and user organisations in their ability to influence policy definitions of quality, and a number of the barriers and obstacles which undermine this process. The paper concludes with two proposals which, considered together, offer the basis for taking forward effective and inclusive partnerships and developing measures for quality consistent with the rights and preferences of service users themselves. They are an essential complement to broader efforts and strategies to develop effective partnerships in health and social care.