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Health Expect. 2018 Jun;21(3):685-692. doi: 10.1111/hex.12668. Epub 2018 Jan 18.

Patient, carer and public involvement in major system change in acute stroke services: The construction of value.

Author information

1
School of Population Health & Environmental Sciences, Faculty of Life Sciences and Medicine, King's College London, London, UK.
2
Department of Applied Health Research, University College London, London, UK.
3
Alliance Manchester Business School, University of Manchester, Manchester, UK.
4
Centre for Primary Care, Division of Population Health, Health Services Research and Primary Care, School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK.

Abstract

BACKGROUND:

Patient 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.

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.

METHODS:

Analysis 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.

RESULTS:

Involvement 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.

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.

KEYWORDS:

impact; involvement; major system change; participation; stroke; value

PMID:
29345395
PMCID:
PMC5980598
DOI:
10.1111/hex.12668
[Indexed for MEDLINE]
Free PMC Article

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