The nature and extent of service user involvement in critical care research and quality improvement: A scoping review of the literature

The importance of involving patients and the public in health care research is globally recognized, but how best to do this in critical care is unclear. The aim of this first published review was to explore the extent and nature of evidence on service user involvement in critical care research and quality improvement. Using the scoping review framework described by Arksey and O'Malley ( 2005 ), a team of service user and critical care researchers searched eleven online databases, reviewed relevant web sites, conducted forward and backward citation searching and contacted subject experts. Extracted data were subjected to a narrative synthesis based on the objectives of the review. Findings from a broad range of evidence support that involvement is becoming more commonplace and that experiences are generally positive. Data extracted from 34 publications identify that involvement is most commonly reported at the level of consultation or participation in project teams, however, the extent to which involvement impacts on projects output remains unclear. Key barriers and facilitators relate to the challenge of recruiting a diverse group of service users, dealing with power hierarchies, being adaptable and effective consideration of the resource requirements. More research is required to identify the most effective methods to support the opportunity for involvement and more thorough reporting of service user involvement practices is strongly recommended.     

Consumers as researchers – innovative experiences in UK National Health Service Research

Consumer involvement is an established priority in UK health‐ and social‐care service development and research. To date, little has been published describing the process of consumer involvement and assessing ‘consumers’ contributions to research. This paper provides a practical account of the effective incorporation of consumers into a research team, and outlines the extent to which they can enhance the research cycle; from project development and conduct, through data analysis and interpretation, to dissemination. Salient points are illustrated using the example of their collaboration in a research project. Of particular note were consumers' contributions to the development of an ethically enhanced, more robust project design, and enriched data interpretation, which may not have resulted had consumers not been an integral part of the research team.     

Consumer involvement and acceptance of biotechnology in the European Union: a specific focus on Spain and the UK

Biotechnology stands out as a clear‐cut example of an industry where legislation on new technologies has been shown to be linked with public attitudes. Indeed, consumer consultation has played a leading role in the acceptance of genetically modified (GM) food as well as in government policy and legislation. This paper examines the issue of consumer consultation by analysing how public opinion has conditioned the acceptance of GM food in the European Union in general and specifically in Spain and the UK. We draw upon the evidence of two Eurobarometer surveys (46.1 and 52.1) to argue that consumer decision making on new technologies is an information‐dependent factor explaining consumer rejection to non‐transparent introduction of GM food. Individuals feel ill‐prepared to make decisions and rely on trusted information advisors such as consumer organizations. Findings suggest significant information dependency as well as widespread heterogeneity in attitudes towards the applications of biotechnology. Finally, the role played by information channels indicates that consumer participation should precede the adoption of communication policies, as they might need to adapt to the specific cultural characteristics of each country.     

Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact

While patient and public involvement (PPI) in health and social care research has progressed successfully in the last decade, a range of difficulties with the evidence base exist, including poor understanding of the concept of impact, limited theorization and an absence of quantitative impact measurement. In this paper, we argue that a paradigm change towards robust measurement of the impact of involvement in research is needed to complement qualitative explorations. We argue that service users should be collaboratively involved in the conceptualization, theorization and development of instruments to measure PPI impact. We consider the key advantages measurement would bring in strengthening the PPI evidence base through a greater understanding of what works, for whom, in what circumstances and why.     

Consumer involvement and marketing in Africa: some directions for future research

Despite an ongoing debate, authors agree that factors that determine consumers' involvement in any goal object are the characteristics of the object, the characteristics of the customer involved and the situational context of the decision. With this as the theoretical background, this paper advocates the need to study African‐specific contextual factors to gain a thorough understanding of consumer involvement and successful marketing practice in this society. An extensive review of the extant literature was done to provide a relevant framework for exploring consumer involvement and African‐related issues. The paper concludes that existing postulations on the subject matter could not robustly capture consumer involvement in Africa due to pertinent influences of cultural values and mores that do not apply elsewhere in the world. Hence, empirical studies to gauge the context‐specific application of the subject in relation to Africa are suggested as imperative. This paper advocates a society‐oriented consciousness for marketing activities in relation to consumer involvement with specific reference to Africa. Therefore, it cautions against undue generalization about the existing postulations on the subject, and provides directions for future research towards updating the literature.     

A model and measure for quality service user involvement in health research

In the UK, 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. The overall purpose of this paper is to support learning about quality service user involvement in health care research. The aim is to provide service users and researchers with a structured and consistent way to reflect and report on their experiences. A range of philosophical and social theories of power and empowerment were reviewed and synthesized to create a model of quality involvement. The analysis encompassed both service user factors (what a person feels able to do, whether they feel their potential is being fulfilled and their sense of being valued) alongside research factors (research relationships, ways of doing research, research structures). A model is presented (Quality Involvement Framework), which contributes theoretically informed perspectives about the meaning and assessment of quality service user involvement in research. The model is developed as a practical measure (a Quality Involvement Questionnaire) for researchers and service users to be more reflective about the constraints and possibilities of involvement. The tools presented here could help research teams to examine personal factors and the research contexts that influence the nature and quality of service user involvement in research. They may also help to identify reoccurring issues about quality which could inform future policy, practice and research.     

Public involvement in health genomics: the reality behind the policies

Public involvement is increasingly becoming the norm as stakeholders recognize the need to inform, consult and engage the public. However, there is limited understanding about the meaning and implications of public involvement, in particular elements like the levels of public involvement, the goals of the involvement, the type of public to be involved, the methods of involving the public and the need to assess effectiveness. We conducted a systematic review of policy documents/guidelines published between 1998 and 2009, by governments, health professionals and the public regarding public involvement in the area of human genomics. Documents were identified using the HUMGEN database and organizational web sites. A total of 70 documents were retrieved addressing public involvement and human genomics. The review revealed that 22 documents mentioned the active process of partnership and collaboration, whereas 27 mentioned consultation and 29 mentioned education. The most common goals were building trust and respect, followed by education, governance and lastly, understanding risks and benefits. We found that less than a third of the documents defined who the public is, and when mechanisms for public involvement were mentioned, they were rarely placed into a context. Few documents drew attention to evaluation. It is reassuring to see that there has been an emphasis placed on public involvement in the area of health and genomics. The findings underscore the gaps existing in the actual policy documents/guidelines and the need to clarify the goals, the methods, who is the public, what mechanism are appropriate and the need for evaluation when addressing public involvement in health genomics.     

Consumer education in the UK: new developments in policy,strategy and implementation

Consumer education is an integral part of the European Community's consumer policy. It plays a key role in consumer empowerment, helping consumers gain the skills, attitudes and knowledge they need to be able to gear the choices they make as consumers to their economic interests and to protect their health and safety. In its policy statement, the Directorate General for Health and Consumer Protection states that the European Community is aware that joint measures at national and Community levels should be more structured, in order to achieve maximum effectiveness. This paper aims to set out the current policy and strategic context for consumer education and empowerment in the UK; review the role of UK government bodies and other agencies concerned with developments; review recent literature; present the results of interviews with an extensive range of key stakeholders and the results of a survey of service heads for trading standards throughout the UK. It will consider implementation, partnership, resources, ideas and opportunities. The research found that the agenda for consumer education in the UK is at an interesting stage of development. The Enterprise Act 2002 gives the Office of Fair Trading (OFT) a statutory power to carry out educational activities. Consumer education is also moving up the agenda in the trading standards service. In addition, the teaching of citizenship in English schools is already stimulating new developments in consumer education. The paper will consider the need for organizations like these to work together to build on these policy developments and ensure that consumer education gains the profile it needs to influence consumer attitudes and behaviour.     

Measuring something real and useful in consumer involvement in health and social care research

Actively involving service users, patients and carers in the creation and development of health research in the UK has recently come under pressure to articulate why involvement is a good use of resources. This has led to a growing interest in creating ways to measure the impact of involving patients, service users and carers in research. However, there is a concern that fundamentally important issues about why we should meaningfully involve service users, patients and carers are missing from the current measurement discourses and activities undertaken in relation to measurement. This paper argues three distinct points, and is based on the experience of the authors working with Folk.us as well as other fields of involvement. Firstly, there should be an open and honest debate about what is meant by the need to measure and assess the effects of involving people in research, addressing issues such as who benefits from the measurement and assessment and why the involvement is being done. Secondly, if at the conclusion of the debate it is deemed necessary to measure and assess, there must be a full and frank discussion about what criteria are appropriate for the proper reporting of involvement activities. This discussion would need to include the less obvious activities that are crucial to active involvement, such as administrative tasks, and where such activities would sit within these criteria. Thirdly, we will consider when such criteria should be applied, at the beginning or end of projects and, indeed, whether one can categorize the ‘beginning’ or ‘end’ of involvement.     

Consumer empowerment: public policy and insurance regulation

This paper explores consumer advocacy as it applies to insurance regulation based on the literature and on the author's experience as a consumer representative and member of the Board of Trustees for the National Association of Insurance Commissioners (NAIC). The NAIC, founded in 1871, is a non‐profit voluntary organization of the chief insurance regulatory officials of the 50 states, the District of Columbia, American Samoa, Guam, Puerto Rico and the Virgin Islands. One of its key objectives is to facilitate the fair and equitable treatment of consumers. Each year 13–16 consumer representatives are selected to speak for consumers at national meetings in addition to serving as year‐round resources to consumers, attorneys representing consumers, regulators, and other groups. Readers of the paper are encouraged to participate more fully in the public policy process. Although the focus of this paper is on insurance and regulation in the USA, the guiding principles apply to other nations, organizations, and consumer causes.     

Evaluating the impact of service user involvement on research: a prospective case study

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.     

Incommensurate paradigms? Bridging the divide between technocrats and the lay public in health care planning: recent experience from Wales

The pressure on the UK National Health Service (NHS) to increase public involvement in the planning of future services has never been greater. Politicians and others argue that ‘lay wisdom’ has much to contribute, and that such involvement is essential if public confidence in the service is to be maintained. Many managers and clinicians, however, operating within an essentially technocratic paradigm, remain unconvinced. Their views are often reinforced by a lack of experience of methods for public involvement that can meet the many practical difficulties involved. Using Arnstein’s ‘ladder of citizen participation’, this paper describes the principal nuances of these two paradigms, explores the nature of the conflict between them, and assesses the extent to which they are really incommensurate. It then briefly describes some of the key methodological principles emerging from public involvement work in parts of the NHS in Wales, and assesses their potential to bridge the divide between the paradigms.     

Consumer education and empowerment in Europe: recent developments in policy and practice

This article develops the findings of an evaluation of European Commission consumer education, information and capacity building actions conducted in 2011, with an examination of action taken by 2016 to address the recommendations. Based on empirical research of documents, in‐depth interviews, focus groups and semi‐structured surveys of Directorate General for Health and Consumers and Directorate General for Education and Culture policy networks, it discusses the journey taken to improve consumer education and empowerment throughout Europe. Implementation of the recommendations aims to transform consumer education and empowerment in Europe, with integrated and updated resources for the maximum number of teachers across the European Union, where teachers can focus the resources on consumer education activities relevant for their learners. A key focus of the new developments is to deliver higher European Union (pan‐European) added‐value, better coordination and synergies with national activities.     

Consumer ethics: A review and research agenda

Consumer ethics continues to draw the attention of academicians and practitioners as a significant economic and social issue globally. Consumer ethics refers to moral principles that govern a consumer's behaviour. This literature review seeks to enrich the discourse on consumer ethics through a comprehensive and detailed review of 106 articles, covering 21 journals from 2010 to 2020. Through an examination of theories, contexts, characteristics, and methodologies used in consumer ethics research, our review (1) presents a comprehensive and up-to-date overview of the research in this field and (2) sets a future research agenda to spur scholarly research. We found studies have primarily relied on a single theoretical lens such as the theory of marketing ethics, planned behaviour, and neutralization theory. Further consumer ethics research focuses on advanced countries, with a narrow focus on developing countries. We have diagnosed the need to examine boundary conditions impacting consumer ethics. Finally, we provide actionable inputs to combat unethical consumer actions as well as promote ethical consumption.     

Consumer Support Networks: improving consumer advice in the UK

In 1999, Central Government launched an initiative to establish Consumer Support Networks (CSNs) throughout Scotland, England and Wales. The purpose of the networks is to improve access to high quality consumer advice services. Information and advice agencies will join together to provide expert, accurate and timely advice for consumers. By April 2002, 191 networks had been established covering in excess of 99% of the population. Only one local authority area in England has yet to establish a network. This paper reviews the development of consumer information and advice provision in the UK and considers the context for establishing CSNs. It also examines the need for consumer advice, the role of Central Government and the quality framework. Each CSN will conduct a gap analysis and assess the need for consumer advice in the local area. This will enable the network to develop a good understanding of consumers in the area and to take a more strategic approach in planning service developments to meet the identified needs. Consumer Support Networks aim to improve the provision of consumer information, education and advice. The literature suggests that consumers who are well educated regarding their rights are empowered through an increased ability to exercise them. Clearly branded advice services, marketed effectively to the public should result in higher levels of consumer awareness and, consequently, improve access to services. It is also expected that better flows of information between agencies will result in greater protection for consumers. Sharing ‘best practice’ nationwide should stimulate service improvements throughout.     

Impact of public involvement in research on quality of life and society: a case study of research career trajectories

This case study illustrates the research career trajectory of two lay researchers after they joined a Big Lottery funded study to explore loneliness and isolation among older people living in a town in the north of England, UK. The two lay researchers were of pensionable age themselves and engaged in all aspects of the research process as full members of the research team. Following research methods training and their substantive input into study design, they engaged fully in an approach of peer‐interviewing of other older adults as the main study method. Following this initial exposure to undertaking research, these exemplars of public involvement in research went on to be involved in other research as co‐researchers at a local and national level. Initially the paper sets out the lay researchers' personal backgrounds and expectations from involvement in research. The impact of their involvement in research on their quality of life and that of their community is presented. Latterly, the societal impact of the lay researcher's involvement is examined. The difference they made to the initial study design and conduct is described first followed by their development as substantial research resources for other studies and community initiatives. Overall the impact of these lay researchers has been significant and the paper provides an example of how involvement in research can impact on individuals and communities to great effect.     

Consumer Primacy on Campus: A Look at the Perceptions of Navajo and Anglo Consumers

ABSTRACT

A comparison was made between 152 Navajo students and 245 Anglo students regarding their perceptions of the educational product. Based upon focus group outcomes, nine elements were used to represent the educational product in the analyses. The elements were conceptualized using the Marketing Lens Model. Four hypotheses were developed and tested. Significant cultural differences were found for the following elements of the educational product: importance ratings among educational attributes, anticipated preparation after graduation, and satisfaction with the educational product. Results are discussed and managerial implications for university administrators are offered.     

Strengthening the voice of mental health service users and carers in Wales: a focus group study to inform future policy

Improving the mental health of the people in Wales lies at the heart of the Welsh Assembly Government's public health agenda and the current reforms of the National Health Service in Wales. However, relative to its importance as a health problem, spending on mental health is disproportionately low. Statutory authorities in Wales highlight the importance of listening to, and learning from, service users and carers. This is seen as a way of improving services within the limited funding that is available. The aims of this study were to describe the ways in which mental health service users and carers are currently involved in mental health services across Wales; and to consider the need for an all‐Wales mental health service user and carer ‘national mechanism’ to promote genuine partnership. Eight focus groups were held across Wales attended by mental health service users and carers. There is a clear picture of the level and nature of participation, evidence of good practice and user and carer based aspirations for future participation. There is an untapped source of energy and experience that could help transform mental health services for the good of all. To ignore this would be to miss an opportunity to improve the quality of care for all those dependent upon these services, both patients and carers.     

Citizen and consumer involvement in UK public services

This paper is concerned with the involvement and participation of citizens and consumers in UK public services. It reflects on levels of involvement over a 30‐year period and maps this accordingly. Using models of participation, the paper reviews the citizen and consumer concepts. Conclusions are drawn about involvement and participation in practice and how this will develop in the future.