Abstract
BackgroundPatient and public involvement is required where changes to care provided by the UK National Health Service are proposed. Yet involvement is characterized by ambiguity about its rationales, methods and impact.AimsTo understand how patients and carers were involved in major system changes (MSCs) to the delivery of acute stroke care in 2 English cities, and what kinds of effects involvement was thought to produce.MethodsAnalysis of documents from both MSC projects, and retrospective in‐depth interviews with 45 purposively selected individuals (providers, commissioners, third‐sector employees) involved in the MSC.ResultsInvolvement was enacted through consultation exercises; lay membership of governance structures; and elicitation of patient perspectives. Interviewees’ views of involvement in these MSCs varied, reflecting different views of involvement per se, and of implicit quality criteria. The value of involvement lay not in its contribution to acute service redesign but in its facilitation of the changes developed by professionals. We propose 3 conceptual categories—agitation management, verification and substantiation—to identify types of process through which involvement was seen to facilitate system change.DiscussionInvolvement was seen to have strategic and intrinsic value. Its strategic value lay in facilitating the implementation of a model of care that aimed to deliver evidence‐based care to all; its intrinsic value was in the idea of citizen participation in change processes as an end in its own right. The concept of value, rather than impact, may provide greater traction in analyses of contemporary involvement practices.
Highlights
Patient and public involvement is required where changes to care provided by the UK National Health Service are proposed
We draw on project documents and data from in-depth interviews with people involved in the implementation of the major system changes (MSCs)
Interviews, which were conducted by (Author) and (Author) in 2012-13, were designed to collect data on the entire process of change; in this paper, we focus on participants’ accounts of how patient and public involvement was enacted during the process of preparing for and implementing the service changes
Summary
Patient and public involvement is required where changes to care provided by the UK National Health Service are proposed. Aims: To understand how patients and carers were involved in major system changes (MSCs) to the delivery of acute stroke care in 2 English cities, and what kinds of effects involvement was thought to produce. The value of involvement lay not in its contribution to acute service redesign but in its facilitation of the changes developed by professionals. We propose 3 conceptual categories—agitation management, verification and substantiation—to identify types of process through which involvement was seen to facilitate system change. Discussion: Involvement was seen to have strategic and intrinsic value. Its strategic value lay in facilitating the implementation of a model of care that aimed to deliver evidence-based care to all; its intrinsic value was in the idea of citizen participation in change processes as an end in its own right. The concept of value, rather than impact, may provide greater traction in analyses of contemporary involvement practices
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