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1.
Int J Equity Health ; 23(1): 94, 2024 May 08.
Article in English | MEDLINE | ID: mdl-38720303

ABSTRACT

CONTEXT: The COVID-19 pandemic has reignited a commitment from the health policy and health services research communities to rebuilding trust in healthcare and created a renewed appetite for measures of trust for system monitoring and evaluation. The aim of the present paper was to develop a multidimensional measure of trust in healthcare that: (1) Is responsive to the conceptual and methodological limitations of existing measures; (2) Can be used to identify systemic explanations for lower levels of trust in equity-deserving populations; (3) Can be used to design and evaluate interventions aiming to (re)build trust. METHODS: We conducted a 2021 review of existing measures of trust in healthcare, 72 qualitative interviews (Aug-Dec 2021; oversampling for equity-deserving populations), an expert review consensus process (Oct 2021), and factor analyses and validation testing based on two waves of survey data (Nov 2021, n = 694; Jan-Feb 2022, n = 740 respectively). FINDINGS: We present the Trust in Multidimensional Healthcare Systems Scale (TIMHSS); a 38-item correlated three-factor measure of trust in doctors, policies, and the system. Measurement of invariance tests suggest that the TIMHSS can also be reliably administered to diverse populations. CONCLUSIONS: This global measure of trust in healthcare can be used to measure trust over time at a population level, or used within specific subpopulations, to inform interventions to (re)build trust. It can also be used within a clinical setting to provide a stronger evidence base for associations between trust and therapeutic outcomes.


Subject(s)
COVID-19 , Delivery of Health Care , Trust , Humans , Female , Male , Adult , Delivery of Health Care/standards , Delivery of Health Care/methods , Middle Aged , SARS-CoV-2 , Surveys and Questionnaires , Pandemics
2.
Soc Sci Med ; 340: 116497, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38096598

ABSTRACT

This paper presents a critical analysis of newspaper articles (N = 60) published in a leading vernacular newspaper about violence against doctors in India. Adopting a theoretical perspective that considers 'news as a cultural practice,' a qualitative content analysis was conducted to examine how the phenomenon is framed and presented in the news, i.e., what is problematized, what causal links are drawn or hinted at, what moral stance is taken or alluded to, and what solutions are proffered and why, to arrive at a nuanced understanding of various aspects of this social phenomenon. Three overlapping key themes emerged from the analysis, namely the narrative of victimization, the changing doctor-patient relationship, and the crisis facing the 'noble profession' of medicine. It reveals how the media shapes public opinion and attitudes towards the state of the medical profession while in turn, reflecting existing opinions, attitudes, and cultural values; the analysis also reveals missing perspectives such as the voices of the patients and the public. We highlight how the findings are not merely the dominant ways in which the rise in incidents of violence against doctors is reported and is understood in society, but how media might have shaped the popular discourse around the issue and why. We reflect on what the reportage says about the state of the medical profession and its standing in society in India.


Subject(s)
Physician-Patient Relations , Physicians , Humans , Violence , Attitude , India
3.
Pharmacol Res ; 199: 107043, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38128855

ABSTRACT

In the life sciences, there is an ongoing discussion about a perceived 'reproducibility crisis'. However, it remains unclear to which extent the perceived lack of reproducibility is the consequence of issues that can be tackled and to which extent it may be the consequence of unrealistic expectations of the technical level of reproducibility. Large-scale, multi-institutional experimental replication studies are very cost- and time-intensive. This Perspective suggests an alternative, complementary approach: meta-research using sociological and philosophical methodologies to examine researcher trust in data. An improved understanding of the criteria used by researchers to judge data reliability will provide crucial, initial evidence on the actual scale of the reproducibility crisis and on measures to tackle it.


Subject(s)
Trust , Reproducibility of Results , Humans
4.
BMC Public Health ; 23(1): 2023, 2023 10 17.
Article in English | MEDLINE | ID: mdl-37848848

ABSTRACT

BACKGROUND: Trust in government is associated with health behaviours and is an important consideration in population health interventions. While there is a reported decline in public trust in government across OECD countries, the tools used to measure trust are limited in their use for informing action to (re)build trust, and have limitations related to reliability and validity. To address the limitations of existing measures available to track public trust, the aim of the present work was to develop a new measure of trust in government. METHODS: Fifty-six qualitative interviews (Aug-Oct 2021; oversampling for equity-deserving populations) were conducted to design a national survey, including factor analyses and validation testing (N = 878; June 1-14th 2022) in Canada. RESULTS: The measure demonstrated strong internal consistency (α = 0.96) and test validity (CFI = 0.96, RMSEA = 0.09, SRMR = 0.03), suggesting that trust in government can be measured as a single underlying construct. It also demonstrated strong criterion validity, as measured by significant (p < 0.0001) associations of scores with vaccine hesitancy, vaccine conspiracy beliefs, COVID-19 conspiracy beliefs, trust in public health messaging about COVID-19, and trust in public health advice about COVID-19. We present the Trust in Government Measure (TGM); a 13-item unidimensional measure of trust in Federal government. CONCLUSIONS: This measure can be used within high-income countries, particularly member countries within the OECD already in support of using tools to collect, publish and compare statistics. Our measure should be used by researchers and policy makers to measure trust in government as a key indicator of societal and public health.


Subject(s)
COVID-19 , Humans , Trust , Reproducibility of Results , Government , Federal Government
5.
Int J Equity Health ; 22(1): 209, 2023 10 07.
Article in English | MEDLINE | ID: mdl-37805472

ABSTRACT

BACKGROUND: Vaccine hesitancy exists on a continuum ranging between complete adherence and complete refusal due to doubts or concerns within a heterogeneous group of individuals. Despite widespread acknowledgement of the contextual factors influencing attitudes and beliefs shaping COVID-19 vaccine hesitancy, qualitative research with equity-deserving groups, accounting for unique lived experiences, remains a gap in the literature. We aim to identify and begin to understand and document the unique contextual factors shaping hesitancy by equity-deserving groups as it relates to relationships with government and health authorities. METHODS: Participants were recruited and interviewed between Aug-Dec 2021. Semi-structured interviews using a convergent interviewing technique were conducted with individuals from the general population, as well as individuals who identify as First Nations, Métis, or Inuit, members of the LGBT2SQ + community, low-income Canadians, Black Canadians, and newcomers. Interviews were audio recorded and transcribed by a team of researchers. Memos were written following interviews and used to complement the thematic analysis of the interview data. Themes are presented in the results section. RESULTS: The rationale for hesitancy among equity-deserving groups is consistent with literature documenting hesitancy in the general population. Contextual factors surrounding equity-deserving groups' attitudes and beliefs, however, are unique and relate to a history of oppression, discrimination, and genocide. We identified factors unique to subgroups; for example, religious or fatalistic beliefs among participant who identify as FNMI, fear associated with lack of testing and speed of vaccines' production among participants who identify as FNMI, Black, and LGBT2SQ + , distrust of the healthcare system for LGBT2SQ + and Black Canadians, and distrust of the government and opposition to vaccine mandates for participating who identify as LGBT2SQ + , low-income, FNMI, or Black Canadian. Newcomers stood out as very trusting of the government and accepting of COVID-19 vaccination. CONCLUSIONS: While our data on vaccine hesitancy largely mirror concerns reported in the vast body of literature citing rationale for COVID-19 hesitancy in high-income countries, the contextual factors identified in our work point to the need for wider systemic change. Our results may be used to support efforts, beyond tailored promotion campaigns, to support the confident acceptance of vaccines for COVID-19 and the acceptance of novel vaccines as future infectious diseases emerge.


Subject(s)
COVID-19 Vaccines , COVID-19 , Humans , Canada , Vaccination Hesitancy , Government , COVID-19/prevention & control , Vaccination
6.
Health Econ Policy Law ; : 1-21, 2023 Sep 27.
Article in English | MEDLINE | ID: mdl-37752732

ABSTRACT

It is acknowledged that health technology assessment (HTA) is an inherently value-based activity that makes use of normative reasoning alongside empirical evidence. But the language used to conceptualise and articulate HTA's normative aspects is demonstrably unnuanced, imprecise, and inconsistently employed, undermining transparency and preventing proper scrutiny of the rationales on which decisions are based. This paper - developed through a cross-disciplinary collaboration of 24 researchers with expertise in healthcare priority-setting - seeks to address this problem by offering a clear definition of key terms and distinguishing between the types of normative commitment invoked during HTA, thus providing a novel conceptual framework for the articulation of reasoning. Through application to a hypothetical case, it is illustrated how this framework can operate as a practical tool through which HTA practitioners and policymakers can enhance the transparency and coherence of their decision-making, while enabling others to hold them more easily to account. The framework is offered as a starting point for further discussion amongst those with a desire to enhance the legitimacy and fairness of HTA by facilitating practical public reasoning, in which decisions are made on behalf of the public, in public view, through a chain of reasoning that withstands ethical scrutiny.

7.
PLoS One ; 18(9): e0290664, 2023.
Article in English | MEDLINE | ID: mdl-37682915

ABSTRACT

The ability of governments and nations to handle crises and protect the lives of citizens is heavily dependent on the public's trust in their governments and related social institutions. The aim of the present research was to understand public trust in government during a time of crisis, drawing on interview data (N = 56) collected during the COVID-19 pandemic (2021). In addition to the general public (n = 11), participants were sampled to obtain diversity as it relates to identifying as First Nations, Métis, and Inuit (n = 7), LGBT2SQ+ (n = 5), low-income (n = 8), Black Canadians (n = 7), young adult (n = 8), and newcomers to Canada (n = 10). Data were coded in consideration of social theories of trust, and specifically the nature of trust between individuals and institutions working with government in pandemic management. Canadians' trust in government was shaped by perceptions of pandemic communication, as well as decision-making and implementation of countermeasures. Data suggest that although participants did not trust government, they were accepting of measures and messages as presented through government channels, pointing to the importance of (re)building trust in government. Perhaps more importantly however, data indicate that resources should be invested in monitoring and evaluating public perception of individuals and institutions generating the evidence-base used to guide government communication and decision-making to ensure trust is maintained. Theoretically, our work adds to our understanding of the nature of trust as it relates to the association between interpersonal and institutional trust, and also the nature of trust across institutions.


Subject(s)
COVID-19 , Government , Pandemics , Trust , Humans , Canada , COVID-19/epidemiology
8.
Front Sociol ; 8: 1270539, 2023.
Article in English | MEDLINE | ID: mdl-38260114

ABSTRACT

Introduction: There is a growing acknowledgement of the salience of hope for mental health service-users, in influencing care outcomes and recovery. Understandings of the processes through which hopes are co-constructed, alongside specific conceptualisations of experiences of hoping, remain limited however. Methods: This qualitative study explored how a range of stakeholders experienced and dealt with uncertainty within three purposively selected psychosis services in southern England. In this article we focus particularly on the co-construction of hope within participants' narratives and how this emotion work shaped experiences of hoping. In-depth interviews (n = 23) with service-users, professionals, managers and other stakeholders were analysed following a phenomenological approach. Findings: Hope was spontaneously identified by participants as a fundamental mechanism through which service-users and professionals managed uncertainty when vulnerable. Professionals were influential in shaping users' hopes, both intentionally and unwittingly, while some professionals also referred to managing their own hopes and those of colleagues. Such management of expectations and emotions enabled motivation and coping amidst uncertainty, for users and professionals, but also entailed difficulties where hope was undermined, exaggerated, or involved tensions between desires and expectations. Discussion: Whereas, hope is usually reflected in the caring studies literature as distinctly positive, our findings point to a more ambivalent understanding of hope, as reflected in the accounts of both service-users and professionals where elevated hopes were described as unrealistic and harmful, to the well-being of professionals as well as of service-users. It is concluded that a greater awareness within care contexts of how hopes are co-constructed by professionals and service-users, explicitly and implicitly, can assist in improving health care and healthcare outcomes.

9.
F1000Res ; 11: 891, 2022.
Article in English | MEDLINE | ID: mdl-35967974

ABSTRACT

In this editorial, we identify the key questions requiring further exploration in the sociology of vaccines. In doing so, we discuss the socio-structural forces shaping views towards knowledge about and access to vaccination, trust in vaccines and regulators/decision makers, the associated problem of financial interests in vaccine development and regulation, and global vaccine inequalities. Across the breadth of these issues, we additionally identify a range of theoretical perspectives and conceptual directions that sociologists might utilise when producing innovative empirical, methodological and theoretical research on vaccination relating to risk and uncertainty, conflicts of interest, power and inequality.


Subject(s)
Vaccines , Health Personnel , Humans , Sociology , Vaccination
10.
Saúde debate ; 46(134): 886-905, 2022. tab, graf
Article in English | LILACS-Express | LILACS | ID: biblio-1410168

ABSTRACT

ABSTRACT Although the National Health Service (NHS) and the Unified Health System (SUS) are systems with similar universal principles, they can show different political measure patterns in the pharmaceutical field. This paper aimed to provide a comparative analysis of pharmaceutical policies highlighting strategies to guarantee access and sustainability to High-Price Medicines (HPMs) in Brazil and England. We performed an integrative literature review in electronic databases, supplemented by grey literature searched on governmental platforms (laws, decrees, ordinances, and resolutions). A total of Forty-seven articles and seven policies were selected and categorized for analysis. The results showed that both countries apply distinct policies to ensure access to HPMs, among them, policies to define price and reimbursement and actions to regulate the use inside the system. Also, these countries apply distinct policies to their sustainability as local partnerships for product development in Brazil and confidential managed agreements with multinational industries in the England. In conclusion, despite similarities in principles, these countries have been proposing and applying distinct pharmaceutical policies to maintain access and ensure the sustainability of their health systems.


RESUMO Embora o National Health Service (NHS) e o Sistema Único de Saúde (SUS) sejam sistemas com princípios universais semelhantes, diferentes políticas no campo farmacêutico podem coexistir. O objetivo deste artigo foi fornecer uma análise comparativa destacando estratégias para garantir o acesso e a sustentabilidade a Medicamentos de Alto Preço (MAP) no Brasil e na Inglaterra. Foi realizada uma revisão integrativa da literatura em bases de dados eletrônicas, complementada por literatura cinzenta pesquisada em plataformas governamentais (leis, decretos, portarias e resoluções). Um total de 47 artigos e 7 políticas foram selecionados e categorizadas para análise. Os resultados demostraram que ambos os países aplicam distintas políticas para garantir o acesso aos MAP, entre elas, políticas para definição de preço e reembolso e ações para regular a utilização destes medicamentos dentro do sistema. Além disso, os países aplicam políticas distintas à sua própria sustentabilidade como as parcerias para o desenvolvimento produtivo local no Brasil e acordos confidenciais com indústrias multinacionais na Inglaterra. Em conclusão, apesar das semelhanças nos princípios, estes países têm proposto e aplicado políticas farmacêuticas distintas para manter o acesso e a sustentabilidade de seus sistemas de saúde.

11.
Cien Saude Colet ; 26(11): 5523-5531, 2021 Nov.
Article in English | MEDLINE | ID: mdl-34852087

ABSTRACT

Decisions need to be made about which services or technologies should be prioritized for provision in the NHS in England .The analysis focuses specifically on the National Institute for Health and Care Excellence (NICE), and on how they appraise expensive medicines. This analysis takes a sociological perspective on decision-making in relation to uncertainty and how uncertainties are managed, drawing on evidence from a scoping study and an ethnographic study. Uncertainties were central to these rationing decisions. Three types of layers of uncertainty -epistemic, procedural and interpersonal - were shown to be salient. Another form of uncertainty was associated with the complexity of the science and that included the level of technicality of the information provided. The analysis highlighted the salience of uncertainties associated with interpersonal relations and the relations between the committees and the drug industry, clinical and patient experts. A key element in these relationships was trust. Decision makers adopted a mixture of formal and informal, collective and individual strategies in making decisions and a need to exercise pragmatism within a more formal institutional framework. The paper concludes by considering more recent policy developments in relation to appraising expensive medicines.


Subject(s)
Drug Industry , Policy Making , Anthropology, Cultural , Cost-Benefit Analysis , Decision Making , England , Humans , Uncertainty
12.
Ciênc. Saúde Colet. (Impr.) ; 26(11): 5523-5531, nov. 2021.
Article in English | LILACS | ID: biblio-1350469

ABSTRACT

Abstract Decisions need to be made about which services or technologies should be prioritized for provision in the NHS in England .The analysis focuses specifically on the National Institute for Health and Care Excellence (NICE), and on how they appraise expensive medicines. This analysis takes a sociological perspective on decision-making in relation to uncertainty and how uncertainties are managed, drawing on evidence from a scoping study and an ethnographic study. Uncertainties were central to these rationing decisions. Three types of layers of uncertainty -epistemic, procedural and interpersonal - were shown to be salient. Another form of uncertainty was associated with the complexity of the science and that included the level of technicality of the information provided. The analysis highlighted the salience of uncertainties associated with interpersonal relations and the relations between the committees and the drug industry, clinical and patient experts. A key element in these relationships was trust. Decision makers adopted a mixture of formal and informal, collective and individual strategies in making decisions and a need to exercise pragmatism within a more formal institutional framework. The paper concludes by considering more recent policy developments in relation to appraising expensive medicines.


Resumo O Serviço Nacional de Saúde Inglês precisa tomar decisões sobre quais serviços ou tecnologias devem ser priorizados. A análise se concentra no Instituto Nacional de Excelência em Saúde e Cuidados (NICE) e em como avalia medicamentos de alto preço. Essa análise adota uma perspectiva sociológica na tomada de decisões em relação à incerteza e como elas são gerenciadas, com base em um estudo etnográfico e um estudo de escopo. As incertezas foram centrais para essas decisões. Três tipos de camadas de incerteza - sistêmica, processual e interpessoal - mostraram-se salientes. Outra forma de incerteza estava associada à complexidade da ciência e que incluía o nível de tecnicidade das informações fornecidas. A análise enfatizou particularmente a importância das incertezas associadas às relações interpessoais e às relações entre os comitês e os fabricantes de medicamentos, especialistas clínicos e de pacientes. Um elemento-chave nesses relacionamentos foi a confiança. Os tomadores de decisão adotaram uma mistura de estratégias formais e informais, coletivas e individuais na tomada de decisões e a necessidade de exercer o pragmatismo dentro de uma estrutura institucional formal. O texto finaliza considerando o desenvolvimento mais recente de políticas relacionadas à avaliação de medicamentos caros.


Subject(s)
Humans , Policy Making , Drug Industry , Cost-Benefit Analysis , Decision Making , Uncertainty , England , Anthropology, Cultural
13.
Front Sociol ; 6: 650997, 2021.
Article in English | MEDLINE | ID: mdl-34095288

ABSTRACT

In the context of current clinical practice guidance, this paper will analyse the role of GPs in decision-making about the primary prevention of cardiovascular disease (CVD) using the concept of pharmaceuticalisation. Drawing on thematic analysis of semi-structured interviews with 20 GPs, the paper argues that the way GPs approach CVD pharmaceuticalisation is shaped by their understandings of and use of guidelines (and the knowledge they embody), existing treatment perspectives and the moral qualities of preventative treatment, and professional evaluations of 'relevant' information. The analysis indicates that there exist disparate and distinct approaches to and understandings of CVD pharmaceuticalisation amongst GPs. Depending on how knowledge, treatment perspectives and values variously combine, GPs sit somewhere on a spectrum of how pharmaceuticalised they are in terms of the approaches to and understandings of the prevention of CVD.

14.
Health Promot Int ; 35(2): 267-278, 2020 Apr 01.
Article in English | MEDLINE | ID: mdl-31220245

ABSTRACT

Consumer trust in the modern food system is essential given its complexity. Contexts vary across countries with regard to food incidents, regulation and systems. It is therefore of interest to compare how key actors in different countries might approach (re)building consumer trust in the food system; and particularly relevant to understanding how food systems in different regions might learn from one another. The purpose of this paper is to explore differences between strategies for (re)building trust in food systems, as identified in two separate empirical studies, one conducted in Australia, New Zealand and the UK (Study 1) and another on the Island of Ireland (Study 2). Interviews were conducted with media, food industry and food regulatory actors across the two studies (n = 105 Study 1; n = 50 Study 2). Data were coded into strategy statements, strategies describing actions to (re)build consumer trust. Strategy statements were compared between Studies 1 and 2 and similarities and differences were noted. The strategy statements identified in Study 1 to (re)build consumer trust in the food system were shown to be applicable in Study 2, however, there were notable differences in the contextual factors that shaped the means by which strategies were implemented. As such, the transfer of such approaches across regions is not an appropriate means to addressing breaches in consumer trust. Notwithstanding, our data suggest that there is still capacity to learn between countries when considering strategies for (re)building trust in the food system but caution must be exercised in the transfer of approaches.


Subject(s)
Consumer Behavior , Cross-Cultural Comparison , Food Industry , Food/standards , Trust , Australia , Food Safety , Food Supply , Humans , Ireland , New Zealand
15.
Int J Health Policy Manag ; 7(5): 402-411, 2018 05 01.
Article in English | MEDLINE | ID: mdl-29764104

ABSTRACT

BACKGROUND: The 2013-2016 Ebola virus disease (EVD) epidemic in West Africa was the largest in history and resulted in a huge public health burden and significant social and economic impact in those countries most affected. Its size, duration and geographical spread presents important opportunities for research than might help national and global health and social care systems to better prepare for and respond to future outbreaks. This paper examines research needs and research priorities from the perspective of those who directly experienced the EVD epidemic in Guinea. METHODS: The paper reports the findings from a research scoping exercise conducted in Guinea in 2017. This exercise explored the need for health and social care research, and identified research gaps, from the perspectives of different groups. Interviews were carried out with key stakeholders such as representatives of the Ministry of Health, non-governmental organizations (NGOs), academic and health service researchers and members of research ethics committees (N=15); health practitioners (N=12) and community representatives (N=11). Discussion groups were conducted with male and female EVD survivors (N=24) from two distinct communities. RESULTS: This research scoping exercise identified seven key questions for further research. An important research priority that emerged during this study was the need to carry out a comprehensive analysis of the wider social, economic and political impact of the epidemic on the country, communities and survivors. The social and cultural dynamics of the epidemic and the local, national and international response to it need to be better understood. Many survivors and their relatives continue to experience stigma and social isolation and have a number of complex unmet needs. It is important to understand what sort of support they need, and how that might best be provided. A better understanding of the virus and the long-term health and social implications for survivors and non-infected survivors is also needed. CONCLUSION: This study identified a need and priority for interdisciplinary research focusing on the long-term sociocultural, economic and health impact of the EVD epidemic. Experiences of survivors and other non-infected members of the community still need to be explored but in this broader context.


Subject(s)
Epidemics/prevention & control , Hemorrhagic Fever, Ebola/epidemiology , Hemorrhagic Fever, Ebola/prevention & control , Social Change , Africa, Western/epidemiology , Female , Humans , Interdisciplinary Research/organization & administration , Male , Needs Assessment , Qualitative Research , Socioeconomic Factors , Stakeholder Participation , Survivors/psychology , Survivors/statistics & numerical data
16.
Int J Health Policy Manag ; 7(11): 1067-1069, 2018 11 01.
Article in English | MEDLINE | ID: mdl-30624883

ABSTRACT

This commentary expands on two of the key themes briefly raised in the paper involving analysis of the evidence about key contextual influences on decisions of value. The first theme focuses on the need to explore in more detail what is called backstage decision-making looking at how actual decisions are made drawing on evidence from ethnographies about decision-making. These studies point to less of an emphasis on instrumental and calculative forms of decision-making with more of an emphasis on more pragmatic rationality. The second related theme picks up on the issue of sources of information as a contextual influence particularly highlighting the salience of uncertainty or information deficits. It is argued that there are a range of different types of uncertainties, not only associated with information deficits, which are found particularly in allocative types of decisions of value. This means that the decision-making process although attempting to be linear and rational, tends to be characterised by a form of navigation where the decision-makers navigate their way through the uncertainties inherent and overtly manifested in the decision-making process.


Subject(s)
Decision Making , Narration , Costs and Cost Analysis , Data Accuracy , Humans , Uncertainty
17.
Health Expect ; 21(1): 128-137, 2018 02.
Article in English | MEDLINE | ID: mdl-28686809

ABSTRACT

CONTEXT: The National Institute for Health and Care Excellence (NICE) has an explicit mandate to include patient and public involvement in the appraisal of medicines to be available for funding on the NHS. NICE involves an appraisal committee who are required to take on board experiential evidence from patient experts alongside population-based evidence on clinical and cost-effectiveness when making a decision whether to fund a drug. OBJECTIVE: This paper considers how NICE Single Technological Appraisal (STA) committees attempt to incorporate the views of patients in making decisions about funding medicines on the NHS. METHODS: A prospective design was employed to follow three pharmaceutical products involving three different appraisal committees. Three data collection methods were used: analysis of documentary evidence sent by NICE, non-participant unstructured observations of the open and closed sessions of meetings and qualitative interviews. SETTINGS AND PARTICIPANTS: Unstructured non-participant observations were carried out at nine STA meetings, and 41 semi-structured interviews were undertaken with committee members from NICE's STA committees, patient experts, analysts from NICE's project team and drug manufacturers. RESULTS: Our analysis showed how the committees displayed a preference for an ideal-type of patient representative, disagreement among the committee when weighing-up patient statements in the STA process and more pre-preparation support for patient involvement. CONCLUSIONS: Although NICE has attempted to adopt an approach flexible to patients and carers through formal decision-making arrangements that incorporate patient views, nonetheless, the processes of the STAs can in fact undermine the very evidence collected from patient representatives.


Subject(s)
Decision Making , Patient Participation , Pharmaceutical Preparations/supply & distribution , Technology Assessment, Biomedical/economics , Advisory Committees , Cost-Benefit Analysis , Health Care Rationing , Humans , Pharmaceutical Preparations/economics , Prospective Studies , State Medicine/organization & administration , United Kingdom
18.
BMC Public Health ; 17(1): 189, 2017 02 13.
Article in English | MEDLINE | ID: mdl-28193265

ABSTRACT

BACKGROUND: Food regulatory bodies play an important role in public health, and in reducing the costs of food borne illness that are absorbed by both industry and government. Regulation in the food industry involves a relationship between regulators and members of the industry, and it is imperative that these relationships are built on trust. Research has shown in a variety of contexts that businesses find the most success when there are high levels of trust between them and their key stakeholders. An evidence-based understanding of the barriers to communication and trust is imperative if we are to put forward recommendations for facilitating the (re)building of trusting and communicative relationships. METHODS: We present data from 72 interviews with regulators and industry representatives regarding their trust in and communication with one another. Interviews were conducted in the UK, New Zealand, and Australia in 2013. RESULTS: Data identify a variety of factors that shape the dynamic and complex relationships between regulators and industry, as well as barriers to communication and trust between the two parties. Novel in our approach is our emphasis on identifying solutions to these barriers from the voices of industry and regulators. CONCLUSIONS: We provide recommendations (e.g., development of industry advisory boards) to facilitate the (re)building of trusting and communicative relationships between the two parties.


Subject(s)
Communication , Food Industry , Food Safety , Trust , Australia , Humans , New Zealand , United Kingdom
19.
Int J Health Serv ; 47(3): 571-594, 2017 07.
Article in English | MEDLINE | ID: mdl-28114872

ABSTRACT

This article examines the "technological appraisals" carried out by the National Institute for Health and Care Excellence as it regulates the provision of expensive new drugs within the English National Health Service on cost-effectiveness grounds. Ostensibly this is a highly rational process by which the regulatory mechanisms absorb uncertainty, but in practice, decision making remains highly complex and uncertain. This article draws on ethnographic data-interviews with a range of stakeholders and decision makers (n = 41), observations of public and closed appraisal meetings, and documentary analysis-regarding the decision-making processes involving three pharmaceutical products. The study explores the various ways in which different forms of uncertainty are perceived and tackled within these Single Technology Appraisals. Difficulties of dealing with the various levels of uncertainty were manifest and often rendered straightforward decision making problematic. Uncertainties associated with epistemology, procedures, interpersonal relations, and technicality were particularly evident. The need to exercise discretion within a more formal institutional framework shaped a pragmatic combining of strategies tactics-explicit and informal, collective and individual-to navigate through the layers of complexity and uncertainty in making decisions.


Subject(s)
Decision Making , Health Care Rationing , Pharmaceutical Preparations/supply & distribution , State Medicine/organization & administration , England , Humans , Prospective Studies , Uncertainty
20.
Int J Health Policy Manag ; 6(1): 5-8, 2017 01 01.
Article in English | MEDLINE | ID: mdl-28005537

ABSTRACT

In India, over the last decade, a series of stewardship failures in the health system, particularly in the medical profession, have led to a massive erosion of trust in these institutions. In many low- and middle-income countries (LMICs), the situation is similar and has reached crisis proportions; this crisis requires urgent attention. This paper draws on the insights from the recent developments in India, to argue that a purely control-based regulatory response to this crisis in the medical profession, as is being currently envisaged by the Parliament and the Supreme Court of India, runs the risk of undermining the trusting interpersonal relations between doctors and their patients. A more balanced approach which takes into account the differences between system and interpersonal forms of trust and distrust is warranted. Such an approach should on one hand strongly regulate the institutions mandated with the stewardship and qualities of care functions, and simultaneously on the other hand, initiate measures to nurture the trusting interpersonal relations between doctors and patients. The paper concludes by calling for doctors, and those mandated with the stewardship of the profession, to individually and collectively, critically self-reflect upon the state of their profession, its priorities and its future direction.


Subject(s)
Delivery of Health Care/standards , Health Care Reform , Legislation, Medical , Physician-Patient Relations , Physicians , Trust , Delivery of Health Care/legislation & jurisprudence , Developing Countries , Health Policy/legislation & jurisprudence , Humans , India
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