User involvement, research and health inequalities: developing new directions: User involvement, research and health inequalities (original) (raw)
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User and Public Involvement in Health Services: a Literature Review
2002
A Literature Review This report is dedicated to the memory of David Brandon. David's life's work was about user empowerment and involvement. David was working on this review shortly before he died in November 2001. We hope that the material here will encourage many other people to put into effect the values that David believed were so important. 3 Executive summary Background Scottish Human Services commissioned this literature review as part of its work for the Scottish Executive funded Partners in Change project. Together with the toolkit Building Strong Foundations, it forms a resource for helping to build an NHS that " listens better to patients and responds more effectively to their needs " (Our National Health, 2000). The review is of literature published primarily in the UK during the past 5 years, examining theories and involvement initiatives across the health and illness spectrum, and reflecting on the effectiveness of different approaches. It was carried...
A model and measure for quality service user involvement in health research
International Journal of …, 2010
In the United Kingdom researchers across the health professions are increasingly being encouraged by policymakers and research commissioners to 'involve' service users in research. A recent review shows there is some evidence that involving patients, carers, relatives, social or community groups directly and actively as part of the research process can improve the conduct of research studies and the impact of the findings. Yet, little is known about how involvement is played out within research studies and there is a need for more critical and consistent assessment of what constitutes quality involvement.
Evaluating the impact of service user involvement on research: a prospective case study
International Journal of Consumer Studies, 2011
As service user involvement in health and social care research has become more firmly embedded in health policies, both in the UK and internationally, there is increasing interest in evaluating its potential benefits and outcomes. Impact studies have highlighted a range of different types of service user involvement, using diverse research methods, within various research topics and involving different stakeholders. Potential benefits to research, researchers and the service users actively involved in research have been identified, along with the possibility of some negative consequences. Many impact studies have been criticized for being based on informal retrospective accounts of researchers and service users working together. Few have been underpinned by conceptual models, and there is a paucity of detailed accounts of the process of involvement that would enable replication. This paper reports an account of a prospective, qualitative exploration of service user involvement within a study, where the aims of the evaluation were agreed beforehand. Reflective discussions about the process and progress of service user involvement at different stages of the study were recorded, transcribed and analysed. The qualitative analysis identified perceived benefits to research, researchers and service user researchers that endorsed previous findings. The analysis also highlighted subjective and interpersonal aspects of service user involvement that have seldom been reported. This evaluation demonstrates the benefits of allowing time for structured reflection and adds to the understanding of the process and meaning of service user involvement in research.
User Involvement' has become the new mantra in Public Services with professionals constantly being reminded that`user knows best'. The purpose of this paper is to ask where the preoccupation with`the User' comes from and to pose some questions about what`User Involvement' actually means. Within our paper we see three issues as central within this. The ®rst is a consideration of the historical antecedents of the discourse of`User Involvement', focusing in on the struggles over British welfare that took place around the late 1970s±early 1980s. This forms the context from which we seek to understand and critique the New Labour project in relation to the massive expansion of regulatory frameworks. We argue that, far from enabling the delivery of high quality integrated services that truly re¯ect the interests of current and future users, these policies represent the further commodi®cation of basic human needs and welfare. Finally, it has become apparent the current User' discourse has assumed contradictory manifestations, in particular the emergence of groupings of`professional users' who participate in the formation of state policy as`expert consultants'. We conclude by arguing for an approach in which user perspectives are neither privileged nor subjugated, but are situated in a process of creative critical dialogue with professionals, which is linked to the development of a concept of welfare driven by emancipatory rather than regulatory imperatives.
From ‘other’to involved: user involvement in research: an emerging paradigm
This article explores the issue of 'othering' service users and the role that involving them, particularly in social policy and social work research may play in reducing this. It takes, as its starting point, the concept of 'social exclusion', which has developed in Europe and the marginal role that those who have been included in this construct have played in its development and the damaging effects this may have. The article explores service user involvement in research and is itself written from a service user perspective. It pays particular attention to the ideological, practical, theoretical, ethical and methodological issues that such user involvement may raise for research. It examines problems that both research and user involvement may give rise to and also considers developments internationally to involve service users/subjects of research, highlighting some of the possible implications and gains of engaging service user knowledge in research and the need for this to be evaluated.
Evaluating user involvement in primary healthcare
International Journal of Healthcare Technology and Management, 2003
Current health policies, both in the UK and internationally, call for a shift from secondary to primary healthcare, and for increased involvement of service users and communities in decisions about their own care and about the way in which health services are provided. This study investigated the way in which users were involved in two London-based primary healthcare projects. Two projects were selected from a broader sample. A case study approach was adopted and a range of methods used to identify the types of user involvement, users' views of the process and, in one case study, users' preferences for participation. Arnstein's conceptual framework for participation was used in the analysis. In this paper the findings of the study are discussed in relation to Cohen's notions of breadth, depth and range of participation. The paper illustrates how these notions may provide a mechanism for providers and commissioners of health services to assess their strategies in relation to user or community involvement, and the degree of success they achieve in implementation.
International Journal of Nursing Studies, 2008
Objectives: In the UK policy recommends that service users (patients, carers and the public) should be involved in all publicly funded health and social care research. However, little is known about which approaches work best in different research contexts and why. The purpose of this paper is to explain some of the theoretical limitations to current understandings of service user involvement and to provide some suggestions for theory and methods development. This paper draws upon findings from a review of the research 'evidence' and current practice on service user involvement in the design and undertaking of nursing, midwifery and health visiting research. Design: A multi-method review was commissioned by the NHS Service Delivery and Organisation (SDO) Research and Development Programme. The timeframe was April 2004-March 2005. The full report (Ref: SDO/69/2003) and supplementary bibliography are available from: http://www.sdo.lshtm.ac.uk.
User involvement in UK cancer services: bridging the policy gap
European Journal of Cancer Care, 2003
User involvement in UK cancer services: bridging the policy gap Recent UK government initiatives aim to increase user involvement in the National Health Service (NHS) in two ways: by encouraging service users to take an active role in making decisions about their own care; and by establishing opportunities for wider public participation in service development. The purpose of this study was to examine how UK cancer service users understand and relate to the concept of user involvement. The data were collected through in-depth interviews, which were analysed for content according to the principles of grounded theory. The results highlight the role of information and communication in effective user involvement. Perhaps more importantly, this study suggests that the concept of user involvement is unclear to many cancer service users. This paper argues the need for increased awareness and understanding of what user involvement is and how it can work.