Patient and public involvement: what next for the NHS?

INTRODUCTION: Patient and public involvement is the cornerstone of the 'patient-led' National Health Service (NHS). Though the UK has had state sponsored arrangements for patient and public involvement since 1974, they have become fragmented and unstable. Patients' forums and the Commission for Patient and Public Involvement in Health replaced community health councils (CHCs) and their national association in England in 2003, but now will be replaced by local involvement networks (LINks) and the Commission will be abolished in 2007. LEARNING FROM HISTORY: This study provides an overview of research on the effectiveness of arrangements for patient and public involvement and reviews the debates about accountability, independence, ensuring consistency of performance, representation and how arrangements for the NHS fit within the wider agenda of citizenship and renewal of democracy. It explores key themes and areas for learning to inform the debate about how LINks might work effectively to improve the health of local people, in particular addressing issues of equity, representation and citizen engagement.
CONCLUSIONS: The proposed LINks provide the opportunity to integrate patient and public involvement into wider initiatives for local democracy and citizen engagement. But debates and key issues about user and public involvement in the 1970s remain current and unresolved. If the new LINks are to succeed where forums and CHCs are considered to have failed, the strengths and weakness of both need to be understood and addressed.