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Public involvement in health care has increased in recent years, and patients now expect to have greater input into the care and services they receive. This paper describes an initiative in one trust in which patients with cancer were able to take a lead in improving services. The evolution of the group into a cancer patients' forum offers an example of good practice.
OBJECTIVES: A mechanism to increase the influence of Health Technology Assessments (HTAs) on hospital policy decisions was developed. METHODS: We describe the process and results of an experiment in which a local in-hospital HTA unit was created to provide sound evidence on technology acquisition issues, and to formulate locally appropriate policy recommendations. The Unit consists of a small technical staff that accesses and synthesizes the evidence incorporating local health and economic data, and a Policy Committee that develops policy recommendations based on this evidence. It represents administration, health-care professionals, patients, and representatives of the clinical disciplines affected by each issue. The level of success of the Unit was independently evaluated. RESULTS: To date, 16 reports have been completed, each within 2-4 months. Five recommended unrestricted use, seven recommended rejection, and four recommended very limited use of the technology in question. All have been incorporated into hospital policy. Budget impact is estimated at approximately 3 million dollars of savings per year. CONCLUSIONS: This local in-house HTA agency has had a major impact on the adoption of new technology. Probable reasons for success are (i) relevance (selection of topics by administration with on-site production of HTAs allowing them to incorporate local data and reflect local needs), (ii) timeliness, and (iii) formulation of policy reflecting community values by a local representative committee. Because over one third of all health-care costs are incurred in the hospital, diffusion of this model could have a significant effect on the quantity and quality of health-care spending.
A follow-up study of road injury survivors admitted to hospital was conducted in the UK. The outcomes of road injury and their impact on quality of life were assessed using the SF-36v2, EQ-5D and CES-D scales. Lower extremity injury predominated (73%) in the study. Furthermore, there was a substantial impact on physical activity, large injury costs and potentially high QALY losses. Analysis of psychological effects found that females had higher levels of depression compared to males. This study identifies the consequences of road injury on individuals, highlighting the effective use of health outcome scales to quantify the quality of life changes over a 1-year period.
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Research and development work in health and social care are increasingly required to involve users at all stages of the research process yet there is scant empirical evidence to support the justification of this laudable aim. Evidence does suggest that at present efforts to achieve this are primarily tokenistic and that more work is needed, both to examine what user involvement in research activity actually means, and how this can best be supported. This paper sets out to describe developments to support involvement of older people through work at the Royal Bank of Scotland Centre for the Older Person's Agenda and to identify a number of challenges that this has raised for researchers. These challenges have arisen out of a number of assumptions that underpin the process of user involvement. The paper discusses some of the benefits of working in partnership with older people and identifies strategic issues for consideration in order to promote future partnership working.
Despite leading models of mental health care encouraging user involvement, users in forensic mental health (FMH) report poor involvement given the difficulty in reconciling shared approaches with risk-averse and legally mandated settings. While previous research has demonstrated qualitative benefits to shared approaches in FMH and has led to a proliferation of self-rated assessment tools, there remains to quantify agreement on self-rated tools and to clarify the impact of shared approaches on care. This meta-analysis examines (1) the correlation between clinician and user ratings, (2) the predictive validity of self-ratings for violence, and (3) the effects of shared risk management on violence and restriction in FMH. Five databases were searched from inception to April 2024, selecting for adult FMH inpatients, shared risk assessment, needs assessment or violence management as interventions, and quantitative outcomes (correlation, agreement, predictive validity, and effect on violence or restriction rates). Fifteen quantitative evaluations were retained. One of three planned meta-analyses could be conducted, with seven records providing paired clinician-user t-tests. Eleven more records provided clinical recommendations on operationalizing shared approaches. Random-effects meta-analysis showed a significant and large paired standard difference of .95 (95% CI = [.49,1.42]) across tools, with significant differences in DUNDRUM-3, DUNDRUM-4, and CANFOR sub-models. While acknowledging between-study heterogeneity, results substantiate quantitative differences where clinicians generally rate more needs and lesser progress than users across tools, showing that self-ratings can and should be used to broach collaborative discussions on needs and progress during FMH treatment. There remains an evidence gap for quantitative benefits in care outcomes and a need to standardize agreement measures for future comparisons and clinical sub-group analyses.
Computer-based systems (CBS) can provide information to help individuals analyze their health care needs and make decisions about management of health problems. This article discusses the development of a CBS that delivers an individualized educational intervention for continence health promotion. System development included cycles of prototype design, testing, analysis, and redesign. Knowledge acquisition, representation methods, and design decisions are discussed. Participants completed 4 rounds of usability testing and a pilot test, which resulted in enhancements to both the CBS and the expert system feature that produced individualized feedback. This iterative design process involved users throughout system development. User involvement resulted in a tutorial to explain navigation and other features of the CBS, graphics to enhance the written message, and clarification of continence-related content. The procedures resulted in an informative, usable product; they can be used to develop systems that provide information about symptom self-management for other health conditions.
This paper provides a tutorial of technology transfer for management information systems in health care. Additionally it describes the process for a national survey of acute care hospitals using a random sample of 813 hospitals. The purpose of the survey was to measure the levels of Internet and Intranet existence and usage in acute care hospitals. The depth of the survey includes e-commerce for both business to business and with customers. The relationships with systems approaches, user involvement, user satisfaction and decision-making will be studied. Changes with results of a prior survey conducted in 1997 can be studied and enabling and inhabiting factors identified. This information will provide benchmarks for hospitals to plan their network technology position and to set goals.
Although the NHS has some shining examples of public and user involvement, many still view it as an optional extra. Policy makers need to adopt a broader strategy for involving users, carers, staff and the wider public. Badly done public consultation will cause problems for policy makers, alienate participants and fuel public cynicism.
Although a considerable amount is known about the ageing process, very little is known about the consumer needs of elderly people with special needs. On the whole a large proportion make do with 'ordinary' products to the best of their ability. The Special Needs Research Unit's extensive experience of evaluating such products highlights the fact the access to domestic appliances can be enhanced if attention is paid to basic human factors issues at the drawing-board stage. For manufacturers it is potentially the most effective means of enlarging their markets. A user-based evaluation strategy is described centering on two well-known products. It is suggested that paying attention to specific features in the early stages of design would result in better products for all.
This paper is based on a presentation delivered by the Special Interest Group for Education and Training (SIGET) at the annual Community Practitioners' and Health Visitors' Association (CPHVA) conference. Service user and carer involvement in all aspects of health care delivery, including the educational process, is a key element of the government's modernisation programme. This paper considers the policy context that requires nurse educationalists to seek the views of service users and carers in planning quality healthcare education programmes. It identifies issues and challenges for those working in higher education establishments based on evidence from the literature and the experiences of the authors. Principles of good practice are suggested which value and respect the views of those who are recipients of healthcare delivery.
BACKGROUND: Intermediate care has become a crucial part of the United Kingdom government's programme for improving services for older people. Older people comprise a substantial part of the user base for these services, and it is increasingly recognized that there is a need for greater user involvement in service development for intermediate care. National initiatives undertaken in intermediate care have sought to widen and deepen the remit of such services, and in this way promote greater independence and improved quality of care for older people. In particular, the government has set out clear plans for reshaping services for older people in the National Health Service Plan and the rationale for greater involvement of older people in service development. This article considers ways in which these national and local objectives may be achieved and considers some of the implications for nursing. AIM: This paper aims to explore the concept of intermediate care and to identify trends and existing evidence of user involvement in care. In this way it charts a possible way forward for the development of a more 'user sensitive' approach. METHOD: The following databases were searched: Medline, Cochrane Library, the Social Science Citation Index and CINAHL. Key words were 'intermediate care', 'older people', 'formal care', 'primary care', 'social services' and 'geriatrics', used in combination. FINDINGS: The findings from this study indicate that there is considerable scope for increased user involvement in service development for intermediate care. Such challenges may be more effectively met through greater clarity of the concept of intermediate care, and a bridging of user involvement at the practice and policy levels. Nurses are key providers of intermediate care in the community. CONCLUSIONS: The involvement of older people in intermediate care service development must be premised on a shared comprehension of the purpose and function of intermediate care. Nurses must be involved in shifting intermediate care from being service-focused to patient-centred. Effective participation eschews the application of global constructs for older people, while supporting greater participation at all levels and robust implementation processes.
AIMS: Service user involvement in mental health service development and research is becoming more common in countries like the UK, USA and Canada. This systematic review of the international scientific literature has been carried out to assess the stage of development of mental health service users involvement in research. METHOD: Systematic review of any research project actively involving service users in any part of the research process. RESULTS: Thirty-five studies met the inclusion and exclusion criteria and were included in the systematic review. Nine studies used quantitative techniques, 24 used qualitative techniques and two studies used both quantitative and qualitative techniques. While three studies were user-led, in three other studies the users were simply consulted but did not have any active role in the research. The remaining 29 studies were based on a collaboration between service users and professional researchers. CONCLUSIONS: The involvement of mental health service users in the research process is feasible both in quantitative and qualitative research studies. The involvement of service users in research has a number of benefits; such research requires more accurate planning and more time than the traditional research.
AIMS: Best practice emphasises user involvement. This exploratory study addresses the views of teenage clients and their parents on service delivery in a specialist Child and Adolescent Mental Health Service (CAMHS) serving a population of 250,000. It aims to explore some of the complexities inherent in children's services when parents are integral to modes of treatment. METHODS: Twenty-seven teenage clients from specialist CAMHS were recruited with their parents (n=30). All were white British, 11 boys and 16 girls, from a range of socioeconomic backgrounds. Focus groups were employed using a series of structured interactive technique to elicit information, preceded by home visits. Analysis of interview data followed standard approaches to qualitative data analysis. Descriptive statistics were generated from both home interview data and focus groups. RESULTS: Three themes emerged: the core values implicated in establishing a therapeutic alliance; the style of therapy and mode of practice (i.e. its inclusiveness of different family members). PRACTICE IMPLICATIONS: Core therapeutic skills are of fundamental importance. Our paper supplements a model of organisational user involvement with a model of therapeutic user involvement for use in negotiating mode of practice. CONCLUSIONS: This exploratory study was a collaboration between service users, researchers and health professionals exploring three important themes of therapy and the complexities inherent in children's services. The process of eliciting views was therapeutic in itself leading to the formation of a parent-led self-help group. The design can be replicated in other specialist CAMHS to achieve attuned practice.
Documentary evidence suggests that attitudes among local health and social services professionals towards the concept of user involvement in health and social care remain deeply polarized, a position characterized by commentators simultaneously as praise and damnation. Perhaps user involvement in health and social care will enhance, and it appears to resonate with the logic of, participatory democracy, in localities where the centralization of power has posed questions as to the nature and purpose of local governance in public services provision. The problems experienced by Britain's black and ethnic minorities within the mental health system have been the subject of exhaustive social inquiry. This essay attempts to explore the way in which legal, social, cultural, and political developments interface with mental health care practice in the UK, in order to assist those responsible for mental health services provision to deliver services that are in line with the Government's expectation of a modernized mental health service that is safe, sound, and supportive. An exploration of these developments within the European, national (UK), and local (Liverpool) contexts is undertaken. An appropriate local response to national priorities will ostensibly cut a swathe through the barriers confronted by the ethnic minority mental health service user in the cross-cultural context, an important prerequisite for the implementation of genuine user involvement.
Organizations have different structures and cultures within which to conduct their business activities. Ranging from autocratic and rigid styles to more laissez-faire models, this report describes the program development and change model used by the Missouri Kidney Program (MoKP). Two examples illustrate how involvement of renal community professional staff and MoKP program staff in instituting and modifying program elements help to build in acceptance from the very beginning, avoiding start-up difficulties and miscues on implementation. Examples cited are the inception of the Nutritional Supplement Program and ongoing modification of the Centralized Drug Program's formulary. The Missouri Kidney Program uses a participatory approach to involve the users of service in program design and modification and historically has used this sort of approach with relative success over time.
Managing the multiple demands of a chronic condition whilst negotiating the developmental tasks of adolescence and young adulthood is a process that is neither well described nor understood, particularly in relation to providing developmentally appropriate health care for young people. The importance of this issue is starting to be reflected within the literature, and although research into models of service delivery is emerging, a lack of user involvement in service development is apparent. This qualitative, user involvement study aimed to describe and understand the considered opinions of 19 young adults with diabetes who were receiving secondary care services about the provision of diabetes services for young people. The findings, gathered using semistructured interview and focus group methods, have potentially wide-reaching implications across primary and secondary health care, and across agencies providing services to children and young people, in terms of facilitating a person's transition through adolescence and into young adult life. Participants suggested key issues to address when developing services for young people, including staff consistency, civility, clinic structures which help a person navigate the health care system, provision of age-specific information, and support in relation to a range of health, emotional, social and developmental needs. Health care professionals can help young people to meet the expectations upon them as autonomous service users by modelling appropriate relationships, helping them to acquire skills and knowledge, and overcome barriers to them becoming active participants in their health care and achieving social participation in a fuller sense. It is somewhat arbitrary to delineate between adolescence and young adulthood in terms of age alone, but in this paper, 'adolescence' refers to the period between 11 and 15 years of age, and 'young adulthood' between 16 and 25 years of age. The phrase 'young people' will also be used to refer to people between 11 and 25 years.