The purpose of this research was to develop a model for the implementation and evaluation of citizen-user involvement in mental health policymaking. The study explored the pathways through which the experiential knowledge of citizen-users enters policy processes, how the outcomes of citizen-user involvement are conceptualized by policy actors, and the contextual factors that influence the implementation and outcomes of involvement. Qualitative instrumental case study methodology was used to focus on the policy field of mental health and social housing. Data were collected through key informant interviews with a purposive sample of 21 people recruited from four policy actor groups: citizen-users, representatives of advocacy organizations, government officials (elected representatives and bureaucrats), and service providers. A review of policy documents as well as forum, committee and task force reports provided additional data for the study. The research built on a previous study that developed a model of the important processes that are used to engage citizen-users in decisions about services and policies. Findings from the current study built on this model by exploring the outcomes, pathways and contexts of involvement from the perspectives of policy actors. Four categories of outcomes were identified: substantive, instrumental, normative and personal. Benefits and risks of involvement were identified within each category. Participants described direct and indirect pathways through which the voices of citizen-users have gained access to policymaking. Direct pathways were those through which individual and collective voices of citizen-users have communicated directly with decision makers. Indirect pathways represented the ways in which the voices of citizen-users were mediated by other policy actors. The findings also highlighted five contextual factors that have influenced citizen-user involvement: the socio-political environments, institutional characteristics, participant characteristics, opportunities to be involved and other influences on policymaking. This research has added to knowledge about the important components of citizen-user involvement in policymaking. The results provide guidance to policy actors about ways to enhance involvement. People with mental health and social housing needs have important experiential and other knowledge to contribute to policymaking. The challenge is the ongoing search for the means to ensure that their voices are heard and carry weight.

Public involvement in health services is an area of policy where ostensibly good intentions appear to repeatedly fail in implementation. Since the late 1990s public involvement in the UK NHS has been subject to frequent reforms, and this has continued in Scotland since devolution. Reformers have criticised mechanisms for being subject to manipulation by managers, parochial in their outlook, and crucially, ‘unrepresentative’ of the wider public. Academic literature has responded primarily by seeking to ‘fix’ the problems of public involvement, offering typologies and models of participation intended to apply across a wide range of settings and to the entire ‘public’. Taking a different route focused on the complexity of a single case, this thesis explores the multiple meanings and goals contained within the public involvement agenda in Scotland, and argues that these are far-removed from the way that many individual patients seek to influence their health-care in the everyday. In particular this project illuminates the creative and political potential of citizens’ interactions with public services. Research comprises an interpretive case study of the implementation of public involvement policy within one Community Health Partnership in Scotland, and a nested case study of interviews with ‘ordinary’ young adults in the area. Fieldwork across twelve months included semi-structured interviews with staff, participants, and young adults; observation of public and private meetings of the Community Health Partnership and the Public Partnership Forum; and analysis of local reports and plans for public involvement. Given a low level of awareness or interest in public involvement, interviews with young adults concentrated instead on accounts of using health services. Rather than simply illuminating ‘non-participation’, the resulting data act as a lens through which public involvement policy can be seen anew. Public involvement is depicted as an unevenly embedded assemblage of actors and materials pursuing a range of goals, including the strengthening of public influence and the diversification of the public voice. I argue that many current participants in the Public Partnership Forum seek not to change the NHS, but to serve or assist it, and accordingly that their actions can best be understood as work or volunteering, not as activism. Finally, drawing on the reported experiences of my young adult interviewees, I argue that the transition from individual patient to participant is an unlikely one, revealing a range of alternative (oppositional) tactics available to individuals who feel unhappy with some aspect of their care. I conclude by arguing that NHS staff confront the inherently chimerical nature of participatory projects within public services. By operating without a sense of what amount or degree of participation is ‘good enough’, public involvement re-interprets my young adult interviewees as apathetic nonparticipants, and NHS managers and staff as failed engagers. The thesis uncovers the neglected, often-mundane everyday realities of public involvement as both governmental practice and citizen participation. In doing so it troubles the growing literature on contemporary forms of citizen participation and engagement, demonstrating the need for a critical approach to an ostensibly compelling policy agenda.

The purpose of this research was to develop a model for the implementation and evaluation of citizen-user involvement in mental health policymaking. The study explored the pathways through which the experiential knowledge of citizen-users enters policy processes, how the outcomes of citizen-user involvement are conceptualized by policy actors, and the contextual factors that influence the implementation and outcomes of involvement. Qualitative instrumental case study methodology was used to focus on the policy field of mental health and social housing. Data were collected through key informant interviews with a purposive sample of 21 people recruited from four policy actor groups: citizen-users, representatives of advocacy organizations, government officials (elected representatives and bureaucrats), and service providers. A review of policy documents as well as forum, committee and task force reports provided additional data for the study. The research built on a previous study that developed a model of the important processes that are used to engage citizen-users in decisions about services and policies. Findings from the current study built on this model by exploring the outcomes, pathways and contexts of involvement from the perspectives of policy actors. Four categories of outcomes were identified: substantive, instrumental, normative and personal. Benefits and risks of involvement were identified within each category. Participants described direct and indirect pathways through which the voices of citizen-users have gained access to policymaking. Direct pathways were those through which individual and collective voices of citizen-users have communicated directly with decision makers. Indirect pathways represented the ways in which the voices of citizen-users were mediated by other policy actors. The findings also highlighted five contextual factors that have influenced citizen-user involvement: the socio-political environments, institutional characteristics, participant characteristics, opportunities to be involved and other influences on policymaking. This research has added to knowledge about the important components of citizen-user involvement in policymaking. The results provide guidance to policy actors about ways to enhance involvement. People with mental health and social housing needs have important experiential and other knowledge to contribute to policymaking. The challenge is the ongoing search for the means to ensure that their voices are heard and carry weight.

Thesis (M.P.H.) -- University of Adelaide, Dept. of Public Health, 2000? / Bibliography: leaves 195-205.

Thesis (Ph.D.) - University of Glasgow, 2007. / Ph.D. thesis submitted to the Faculty of Medicine, Public Health and Community-Based Sciences, 2007. Includes bibliographical references. Print version also available.

Thesis (Ph. D.)--University of Texas at Austin, 2005. / Vita. Includes bibliographical references.

This research concerns neglected affective, relational, material, and processual dimensions of amateur crafts practice in an arts-for-health context. Existing studies on the social impacts of the participatory arts are prone to blur the borders between advocacy and research, and are vulnerable to accusations of ‘policy-based evidence making’ (Belfiore and Bennett, 2007, p.138). Researchers have relied predominantly on interview material and surveys, and there is a lack of finegrained, long-term, ethnographic work based on participant observation. The distinctive potentials of making in this context, furthermore, have barely been investigated. This thesis addresses these deficits through a sustained ethnographic study of two wellbeing-oriented crafts groups supported by Arts for Health Cornwall (AFHC). One group was based in the community, the other in primary care. Observation produces novel understandings of the potential benefits of crafting for health as emergent properties of particular locations, relationships, and practices organized in distinctive ways around creative making. Firstly, as a counterweight to normative views of amateur crafts creativity as soothing and distracting, this study highlights a range of transformative affects including frustration, creative ambition, and enchantment. Secondly, countering an atomistic, stable depiction of such affects, this study describes them as fluid aspects of making processes. Thirdly, these unfolding processes are seen to be inseparable from the intersubjective (peer-to-peer and participant-facilitator) dimensions of creative groups. Lastly, this in vivo perspective problematizes a view of materials as an inert substratum upon which makers exercise their creative powers, and highlights the relevance of a ‘vital materialism’ (Bennett, 2010) for understanding the potential benefits of manual creativity. Sustained observation also produces a situated, spatial account of the extended networks of community belonging produced by the activities of such groups. Fieldwork is contextualized within a wider field using interviews with nine UK arts for health organizations. Consideration is also given to the influence of contemporary discourses of wellbeing, agency, and creativity on policy making in the area of arts for health. Findings have implications for good practice in the field, and for further research to inform political leadership concerning the role of the arts in health. These implications are drawn out in relation to the potential future contribution of the arts within a UK health economy undergoing rapid, crisis-driven transformation.

A PolÃtica Nacional de HumanizaÃÃo da AssistÃncia Hospitalar foi instituÃda em 2003, visando à promoÃÃo de uma cultura de atendimento humanizado na Ãrea da saÃde. As diretrizes sÃo norteadoras e se expressam no mÃtodo da inclusÃo de usuÃrios, trabalhadores na gestÃo dos serviÃos e nas prÃticas de saÃde. Opera com dispositivos, atualizando as diretrizes por meio de estratÃgias destinadas à promoÃÃo de mudanÃas nos modelos de atenÃÃo e da gestÃo. A investigaÃÃo teve como objetivo geral identificar as necessidades de acolhimento aos membros familiares durante a hospitalizaÃÃo e, como especÃficos, desenvolver um grupo de suporte de acolhimento aos familiares de pacientes hospitalizados como estratÃgia da polÃtica de humanizaÃÃo, analisando como acontecem o acolhimento aos familiares dos pacientes hospitalizados e a PolÃtica Nacional de HumanizaÃÃo. Foi realizada sob a abordagem qualitativa, do tipo pesquisa-aÃÃo, por meio do processo grupal, em um hospital geral de ensino, de grande porte, de referÃncia no Estado, localizado na cidade de Fortaleza-CearÃ. Os participantes do estudo foram componentes familiares que estavam acompanhando parentes internados nas clinicas A e B do citado hospital no perÃodo do estudo. Os dados foram coletados no perÃodo de maio a julho de 2013, por meio da entrevista individual, da criaÃÃo de um grupo de suporte aos familiares de pacientes internados e da tÃcnica de colagem. A pesquisa foi realizada com base nos cuidados Ãticos necessÃrios aos seres humanos, preconizados pela ResoluÃÃo n 466/2012, do Conselho Nacional de SaÃde Foi iniciada apÃs a provaÃÃo pelo Comità de Ãtica em Pesquisa da instituiÃÃo. Para manter o compromisso de sigilo contido no Termo de Consentimento Livre e esclarecido, os sujeitos foram codificados com a letra F de familiar e o nÃmero por ordem de registro. Os dados foram analisados pela tÃcnica de AnÃlise de ConteÃdo, de Bardin. Os resultados estÃo expressos na seguinte ordem: apresentaÃÃo dos familiares, anÃlise das entrevistas; realizaÃÃo do Grupo de Suporte aos Familiares; avaliaÃÃo do grupo como estratÃgia para o acolhimento, por meio da colagem e anÃlise do acolhimento no hospital e a PolÃtica de HumanizaÃÃo. Em face dos resultados do estudo, que permitiram alcanÃar os objetivos propostos, espera-se que possam subsidiar a equipe de profissionais da saÃde, bem como a administraÃÃo do referido hospital, a potencializar as aÃÃes e medidas na infraestrutura, como tambÃm as de acolhimento e efetiva humanizaÃÃo na assistÃncia ao familiar durante a internaÃÃo, com interesse nos sentimentos do componente da famÃlia ao acompanhar o seu parente; nas dificuldades em lidar com seus sentimentos; nas necessidades e obstÃculos no hospital, assim como nas formas de ajuda relacionadas Ãs informaÃÃes e ao apoio psicolÃgico solicitado. / The National Policy for Humanization of Hospital Care was established in 2003, aiming to promote a culture of humane health care. The guidelines are expressed in the method of inclusion of users, workers in service management and in health practices. It employs devices, updating the guidelines through strategies designed to promote changes in patterns of care and management. The mail goal of the present study was to identify the needs of welcoming family members during the hospital stay, and as specific objectives, to develop a group to support the family of inpatients as a humanization strategy, analyzing the welcoming of family of patients and the National Humanization Policy. A qualitative action research approach, using a group process, was applied to a large general teaching hospital, reference in the state, located in Fortaleza, Cearà State. The study subjects were family members accompanying inpatients in clinics A and B of that hospital during the study period. Data were collected from May to July 2013 through individual interviews, creating a support group for family members of hospitalized patients, and collage technique. The study was conducted on the basis of ethical considerations to humans, recommended by the Resolution 466/2012, from the National Board of Health, and initiated after the approval by the Research Ethics Committee of the institution. To maintain the commitment to confidentiality of the Informed Consent, the subjects were coded with the letter F (family member) and the number by order of registration. Data were analyzed using content analysis of Bardin. The results are presented as follows: presentation of family members; analysis of the interviews; completion of the Family Support Group; assessment of the group as a strategy of welcoming, through collage and analysis of the welcome at the hospital and the Humanization Policy. Our results allowed the achievement of the proposed objectives, and it is expected that they can support health professionals, as well as the administration of the hospital, to increase the actions and measures in infrastructure, including the welcome and effective humanization in assisting the family during hospitalization, with interest in the feelings of the family when accompanying the relative; the difficulties in dealing with feelings; the needs and obstacles in the hospital as well as in the forms of assistance related to information and psychological support requested.

This research builds upon a body of work on the development and introduction of information systems in the UK National Health Service following the implementation of the White Paper 'Working for Patients'. None of the earlier studies examined the use of the information from those systems for costing health care services, the methodologies used by hospitals for costing their products or the comparability of the output from the costing methodologies used, thereby making this study different from prior work. Costing methodologies cited in the literature are described from the perspective of single organisations. This research analyses the development of an aggregated costing approach, focusing on the issues laced when trying to develop a costing methodology that will be applied to a group of autonomous organisations. The research provides a comparison of health care costing methodologies in both the United Kiiigdom and Ontario, Canada. Collected through interviews and a postal survey tool, data from NHS hospital care providers are analysed to identify both the conformity of the approach and the results of the costing methodologies eniployed. Information from an extended field study is used to review the development of a micro-costing framework in Ontario for radiation therapy services. These findings are then synthesised into a generic framework applicable within other health care organisations seeking to implement a comparative costing methodology. This lramcwork is used to identify possible causes of variance in health care costing approaches. Elements of the framework requiring modification to account for local conditions, such as salary rates or provider availability, are identified and suggestions are made for further work resulting from this research to increase understanding about variability in health care costing methodologies and test the implementation of the generic costing methodology.

Introduction: Beta-Blocker Evaluation Survival Trial (BEST) sub-analyses indicated a likely interaction between bucindolol and race disadvantaging black heart failure (HF) patients (Domanski J Cardiac Fail 2003); Arg389 homozygotes having adjusted reductions of 38% in mortality and 34% in mortality/hospitalization over other genotypes (Liggett PNAS 2006). Bucindolol is being evaluated in Arg389 genotype patients in the GENETIC-AF trial (NCT01970501). Objective: To conduct parallel (using Domanski et al and Liggett et al) ex ante economic evaluations of Arg389 genetic testing in stage III/IV HF to support bucindolol treatment decisions (if Arg389-positive) and carvedilol (if Arg389-negative) treatment versus no such testing and empirical bucindolol; using Domanski et al and Liggett et al BEST sub-analyses. Methods: In both Domanski et al and Liggett et al analyses, we used a decision tree model with time horizon of 18 months divided into 3 six-month cycles to estimate the cost-effectiveness and cost-utility of Arg389 genetic testing, considering overall survival (OS) from Domanski et al and Liggett et al BEST sub-analyses. Costs and utilities were retrieved from literature except for assumed cost for bucindolol treatment (1.5x cost of carvedilol) and genetic testing ($250). Discount rate was set at 3%/yr. Weibull distributions were fitted to OS data. Life-years (LY) and quality-adjusted life-years (QALY) were used to estimate incremental cost-effectiveness (ICER) and cost-utility ratios (ICUR), and results were validated using probabilistic sensitivity analyses (PSA). Results: In the Domanski et-based analysis, Arg389 genetic testing versus no testing was associated with incremental gains of 0.29LYs and 0.27QALYs at incremental cost of $726; yielding ICER of US$2,503/LY and ICUR of US$2,688/QALY gained. In the Liggett et al-based analysis, Arg-389 genetic testing versus no testing was associated with incremental gains of 0.35LYs and 0.32QALYs at savings of -$1.081; for ICER of -US$3,089/LY and ICUR of -US$3,378/QALY gained. Both analyses were confirmed in PSAs. Conclusion: Arg389 genetic testing to support bucindolol treatment in stage III/IV HF patients prevails economically over bucindolol treatment without genetic testing due to superior OS. If bucindolol is priced at 1.5x the cost of carvedilol. this economic benefit is likely to disappear if bucindolol and/ or genetic testing are priced higher. The clinical and economic benefits of bucindolol treatment with versus without Arg389 genetic testing versus empiric carvedilol remains to be assessed.