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 involvement in health research: a UK scoping and survey

Consumer involvement or patient and public involvement (PPI) in health research is a UK policy imperative and a prerequisite for many funders. PPI in research is defined as research carried out with or being carried out by the public (or service users), rather than research on patients and public as subjects or participants. Despite the clear policy driver, there is relatively little empirical evidence on the extent, processes and impact of user involvement in research. This paper aims to add to the international evidence base on PPI in research by providing a key overview of current trends and impacts. In order to understand the current extent and variation of PPI in research, a scoping exercise and survey were carried out on selected UK studies. Six research topic areas (cystic fibrosis, diabetes, arthritis, dementia, intellectual and developmental disabilities, and public health) were selected to ensure a range of designs, study populations and histories of PPI in research. A total of 838 studies (non‐commercial studies and not older than 2 years) were contacted. The response rate for the scoping was 38% and the survey 28%. In the scoping, 51% of studies had some evidence of PPI and in the survey 79%. The most common PPI activity was steering committee membership and reviewing patient information leaflets. There appeared to be some blurred roles with patients participating as research subjects as well as carrying out patient involvement roles. A major finding was the limited amount of available information about PPI in publicly accessible research documents. We suggest that the invisibility of this type of involvement and the lack of routinely collected information about PPI results in a lack of shared understanding of what optimal PPI in a study should look like, with important implications for practice. Furthermore, without a framework to review PPI it is difficult to know if different approaches to PPI have a different impact on key outcomes of the research.     

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.     

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.     

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.     

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.     

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.     

Embedding consumer culture in health and social care education – a university office's perspective

Health and social care services are changing – and this change is radical. Service user and carer involvement has been a key aspect of health and social care policy for a number of years. In terms of the National Health Service (NHS), this has been significantly strengthened by the report ‘High Quality Care for All’. The NHS will no longer be a monolith dictating what services it offers. It is beginning to take seriously the views of its consumers: the patients, service users and carers. The NHS is starting to put the patient experience at the centre of everything it does, and its regulators are asking for evidence of public and patient involvement. This process may yet prove to be one of the NHS' greatest challenges as it transforms to prioritize the consumer viewpoint. Social care, though further down the line in relation to involvement, is now responding to the relatively new personalization agenda. This paper will consider what the university sector can do to embed the consumer and service culture within the education of health and social care professionals. It looks at the challenges of involvement and required culture change, highlighting the key points to address in the early and middle stages of involvement from a university office's perspective. It includes examples of consumer involvement in teaching, assessment and the selection of students and how their input is starting to make a difference. Finally, the paper outlines what is needed in a development office to establish and support effective service user and carer involvement on health and social care courses in higher education. The article concludes by acknowledging that there is much more work that needs to be done in this field to embed the work of a development office, but that early steps have been promising.     

A critical review of primary health care reform in Bulgaria: impact on consumers

The Health Care System in Bulgaria is in a period of transition and is undergoing profound changes in financing, organization and ownership. A priority of this reform is to shift the focus of healthcare to the primary sector and to emphasize general practice. New legislation in support of this health care reform has been passed over the last few years. However, this legislation, although consistent with the global aims to be achieved, has proven to be contradictory in terms of its practical implementation. This has had a negative impact on health care consumers’ interests and rights. This paper evaluates the effects of primary health care reform in Bulgaria from the perspective of patient satisfaction. For this purpose, a major task to be fulfilled is to identify the contradictions emerging between the legislation outlining the reforms and the realities of practical implementation with respect to its impact on consumers. The methods applied include: a review of the legislation, a review of the practical progression of the reform process, and an assessment of the new developments in health care consumers’ interests and rights. Considerable contradictions have been found between the legal framework of health care reform in primary care and existing experiences, traditions and expectations. The legislation is inconsistent with the existing realities of healthcare provision. This is leading to turmoil in the health care system during its present transformation and is infringing upon consumers’ rights. Problems emerging in the process of reform need to be identified, and solutions need to be found and worked out as the reforms progress. An assessment system has to be developed to monitor the overall reform process and to evaluate the effectiveness and efficiency of the changes introduced. The impact on consumer and patient satisfaction should be an area of prime concern during these assessments.     

Defining the gap between research and practice in public relations programme evaluation – towards a new research agenda

The current situation in public relations programme evaluation is neatly summarized by McCoy who commented that ‘probably the most common buzzwords in public relations in the last ten years have been evaluation and accountability’ (McCoy 2005, 3). This paper examines the academic and practitioner‐based literature and research on programme evaluation and it detects different priorities and approaches that may partly explain why the debate on acceptable and agreed evaluation methods continues. It analyses those differences and proposes a research agenda to bridge the gap and move the debate forward.     

Productivity and impact in advertising research since the millennium: a profiling and investigation of drivers of impact

What does it take to become a top advertising scholar in productivity? What drives impact in advertising research? This article sets out to answer these two questions by assessing the productivity and impact among scholars and their work in advertising since the millennium. As a two-part study, we begin by benchmarking and profiling the top 1% scholars in the field based on their research publications in the three top advertising journals (Journal of Advertising, Journal of Advertising Research, and International Journal of Advertising). Next, we employ a three-perspective conceptual model to identify the salient drivers of impact in advertising research. By content analyzing 1443 articles in the three journals published between 2000 and 2014, we show that certain universalistic and particularistic factors (to a lesser extent) significantly predict paper citations. Our findings reveal how advertising academia is advancing and showing signs of internationalization in the new millennium, which provides implications for the field's advancement and scholarship.     

Managing relational conflict in Korean social enterprises: The role of participatory HRM practices,diversity climate,and perceived social impact

Social enterprises are hybrid organizations that primarily pursue social missions while also seeking economic gains. Drawing on workplace diversity and conflict theories, this article addresses recent calls for further research to explore how employees within social enterprises experience internal conflicts arising from the organizational pursuit of dual, competing missions (i.e., social and economic), and how social enterprises manage, and potentially overcome, these challenges. In the context of Korean social enterprise, we conducted a quantitative study that built on an initial explorative qualitative study. Our research examined whether perceived participatory human resource management practices and diversity climate increase employees’ affective commitment by reducing their relational conflict. We further explored a boundary condition, perceived social impact, which strengthened this mediation relationship. Our results offer significant insights into social enterprise, business ethics, and broader management literature. Implications for future research and practice are also discussed.     

The economic and social role of small stores: a review of UK evidence

There is considerable concern in the United Kingdom regarding the growing power of supermarkets, a concern that culminated recently in a UK Competition Commission enquiry into the grocery sector. Against this backdrop, some suppliers, independent retailers and societal groups have been critical of the investigation, implying that it did not do justice to the role of small stores in society, and that this issue is insufficiently understood by policy-makers. To address this need, this article reviews and assesses the available UK evidence on the social and economic role of small independent stores and the values that are attached to them by the communities they serve. This is achieved using the Systematic Literature Review methodology. The purpose of the article is to gauge the evidence as a platform for wider debate on how the role of small stores can be maintained and enhanced. The article identifies key themes and gaps in the literature as a basis for identifying research priorities and highlights implications for public policy and planning.     

Consumer involvement in research using oral history: ‘What are people's experiences of health and well‐being in Halton?’

The purpose of this paper is to describe a qualitative oral history case study that involved consumers in research and followed a collaborative approach in the north‐west of England. This study had two aims: (1) to increase local voluntary groups research capacity through active involvement in research; and (2) to explore the community's historical perceptions of health and well‐being. The research team included four lay researchers from local voluntary groups supported by an academic researcher. Data collection used semi‐structured interviews based on oral history life stories that focused on health and well‐being. Thematic data analysis and mind maps were used to create a collective narrative. This paper will provide a brief synopsis of the findings from the main themes of health and well‐being, and reflect on the process of consumer involvement in research using oral history. Outputs have included dissemination at a local and national level, increased knowledge and confidence in the research process, and involvement in other related initiatives, such as Local Involvement Networks, partnership working with local libraries and collaboration with the regional archivist.     

人工智能在我国公共卫生建设中的应用与思考

新冠疫情的暴发以及长期防治对中国的公共卫生体系造成深远影响,给我国突发公共卫生事件应急与防控机制带来巨大的考验。在疫情防控的过程中,信息化技术为传统医疗机构带来瞩目的帮助与改变,人工智能、大数据、5G高速网络等新兴高科技的蓬勃发展在直接提升医疗水平方面表现出巨大潜力。本文就人工智能在疫情期间的医疗辅助功能展开讨论,并对未来我国公共卫生体系的建设进行了思考。     

Congruence in the assessment of service quality between employees and customers: A study of a public health care delivery system

Using social information processing theory, we examined the congruence between employee and customer assessments of organizations' service quality. The setting was a public health care delivery system. Contrary to expectations, employee assessments of service quality were lower than those of their customers. Also unexpectedly, employees with professional training had less congruent assessments than other employees. As expected, employees with longer tenure and those in departments with stronger customer service work climates had more congruent assessments relative to their customers. The results have implications for both management theory and for managers interested in developing customer-centered organizations.     

Analysis of occupational health hazards and associated risks in fuzzy environment: a case research in an Indian underground coal mine

This paper presents a unique hierarchical structure on various occupational health hazards including physical, chemical, biological, ergonomic and psychosocial hazards, and associated adverse consequences in relation to an underground coal mine. The study proposes a systematic health hazard risk assessment methodology for estimating extent of hazard risk using three important measuring parameters: consequence of exposure, period of exposure and probability of exposure. An improved decision making method using fuzzy set theory has been attempted herein for converting linguistic data into numeric risk ratings. The concept of ‘centre of area’ method for generalized triangular fuzzy numbers has been explored to quantify the ‘degree of hazard risk’ in terms of crisp ratings. Finally, a logical framework for categorizing health hazards into different risk levels has been constructed on the basis of distinguished ranges of evaluated risk ratings (crisp). Subsequently, an action requirement plan has been suggested, which could provide guideline to the managers for successfully managing health hazard risks in the context of underground coal mining exercise.     

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.     

Retrospection on the impact of Wallendorf and Brucks' “Introspection in consumer research: Implementation and implications”

This paper offers a retrospection of the impact of Wallendorf & Brucks' (W&Bs') (1993) contribution. The present article considers W&Bs' contributions to theory and research and uses citation analyses to consider W&Bs' impact in the literature. The number of citation references indicates that the article has substantial impact on introspection scholarship. An analysis of the contents of references confirms W&Bs' unique importance to introspection theory and research. W&Bs' influence on introspection studies is diverse and substantive, spanning a wide range of topics that W&B explicate. These contributions move W&B from noteworthy scholarship to seminal status in its contributions to introspection research.     

Antecedents,consequences, and reducers of perceived risk in social media: A systematic literature review and directions for further research

The social media has become an integral part of the marketing strategy. Marketing activities are now more inclined to online social networks (OSNs) than ever before in the history of the business. More and more consumers are joining OSNs for the sake of fun, socialization, and online buying. Every user perceives some degree of risk while joining and using OSNs. The current systematic literature review gathers and synthesizes research records of the last 9 years (2010–18) on consumer perceived risks concerning OSNs. We used PRISMA as a protocol to conduct this systematic literature review. The synthesis provides a detailed account of the perceived risk factors, their antecedents and consequences, risk-reducing strategies, and future research potential in the said domain.