Developing inclusive partnerships: user-defined outcomes, networking and knowledge--a case study

Two major developments have been associated with the reorientation of United Kingdom health and social care policy and provision in recent years, placing a new emphasis on: quality and 'outcome' measures; and service user (and public and patient) involvement. These issues have become central to health and social care, representing expressions of the shift in political and ideological interest in public policy. However, these two strands of development have tended to be treated as discrete discourses and have developed separately in policy. Nevertheless, it can hardly be assumed that what policy makers, service planners, providers and purchasers would value and prioritise as good quality would necessarily coincide with what service users would want. Developing effective partnership working needs to go beyond considerations of organisations and professional groupings, and fully involve service users as one of the key stakeholders. This paper describes the findings of three projects undertaken by Shaping Our Lives. These studies confirmed that service-user concepts of outcomes and quality may differ significantly from those currently employed; moreover, service users are able to offer a complex and sophisticated model of what outcome measures might look like if they were centrally involved in their definition and application. Nevertheless, service users currently have little impact in defining and influencing quality outcomes. The projects also highlight the importance of networking and knowledge sharing for service users and user organisations in their ability to influence policy definitions of quality, and a number of the barriers and obstacles which undermine this process. The paper concludes with two proposals which, considered together, offer the basis for taking forward effective and inclusive partnerships and developing measures for quality consistent with the rights and preferences of service users themselves. They are an essential complement to broader efforts and strategies to develop effective partnerships in health and social care.     

Citizenship, community participation, and health as seen by health care professionals: a case study in public health services

This paper deals with the subject of citizenship and people's participation in the health area through an analysis of ideas pertaining to a specific group: health care professionals working in Basic Health Care Clinics in the 3.1 Programmatic Area of the City of Rio de Janeiro (Brazil). The article analyzes their views on the subject and presents them in light of health-related legislation in the Brazilian constitution. It also analyzes the professionals' role vis-à-vis users in raising community awareness that health care is one of their basic rights. Field data from qualitative social research methodology showed a significant heterogeneity in the professionals' conceptions, dividing them into two groups: those belonging to teaching institutions and those working in institutions providing health care. This analysis shows the strategic role that day-to-day relationships between professionals and the community can play in the social change process and the establishment of social rights. It also discusses the viability of this process in view of the discovery of the subjective involvement of the health professionals who promote this process.     

Women's rights and health: the case of Oromo women in Ethiopia

Human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS), for which we have no cure or vaccination, is the major health problem in Ethiopia. This epidemic generally has affected poor communities and women. To contain this epidemic, the empowerment of women is essential. In fact, the current working definition of health by the World Health Organization (WHO) makes social well-being a part of everyday living, which is an essential dimension of the quality of life. The concept of quality of life means an opportunity to make choices and even change the situation one is in. Here, the concepts of health and human rights intersect, because of the quality of life requires freedom of choice, dignity and respect. Dignity, the right to access basic education and information, as well as the right to life are the major elements of human rights. It is for that purpose that health promotion is intended to enable people to increase their control over determinants of health and thereby improve their health. Women's involvement in outlining the agendas of health promotion is vital to achieve the desired goals. In this article I examine human rights violations in Ethiopia and the lost opportunities for Oromo women to make choices in life within the framework of the Universal Declarations of Human Rights (UDHR).     

Community health agents and patients' privacy

This is an exploratory study on views of various social players in the Brazilian Family Health Program, concerning the right to privacy in the relationship between users of the program and community health agents (CHA). The following healthcare professionals were interviewed: heads of basic healthcare units, physicians, nurses and community health agents, working at health units in the city of Sao Paulo, Brazil, in 2002. Healthcare professionals and managers agreed that limits should be placed on access by CHAs to certain user information, including diagnosis. The study showed that frequent contact between users and CHAs results in users' disclosure of their health conditions to CHAs prior to consulting other professionals in the healthcare team. This generates the following ethical issue: Is there any specific scope of confidentiality between the CHA and users over information that should not be disclosed to other team members?     

中国卫生改革与发展蓝图的构想

解决当前“看病难、看病贵”问题涉及到卫生服务的可及性、公平性和成本问题,但这并不是卫生改革和发展要达到的最终目的,“看病难”和“看病贵”体现了中国卫生系统的“制度性疾病”。提出了中国卫生改革与发展蓝图框架结构,即:实现1个目标(普及基本卫生服务)、健全3个制度(基本医疗保险制度、基本卫生服务制度和基本药物制度)及实施6个政策策略。在未来的15年内,中国将在“以人为本,科学发展观”的思想指引下,建设一个和谐的、社会主义的小康社会。构建和谐社会,普及基本卫生服务是全国人民的愿景。为强化政府对基本卫生服务的保障责任,促进卫生服务的公平性,设想能否将“普及基本卫生服务”与“普及九年义务教育”共同构成中国最主要的2个社会政策。实现“普及基本卫生服务”是一个长期的过程,体现卫生事业发展要与经济发展水平相适应,需要动员全社会共同参与。     

Is health a labour,citizenship or human right? Mexican seasonal agricultural workers in Leamington,Canada

Post-North American Free Trade Agreement (NAFTA) trade liberalisation combined with post-9/11 border securitisation means North America increasingly relies on pools of temporary foreign labour, particularly in the agricultural and service sectors. Despite being temporary, these workers often spend most of their years on foreign soil, living and working in isolated rural communities, far from their own families and communities. Migrants' mental and physical health suffers due to hazardous and stressful working conditions, sub-standard housing, lack of social support and limited access to health and social welfare services. Assuming access to health is a basic human right, who is responsible for the health of temporary foreign migrant workers? Is it the nation-state? or the Employers and/or unions? or Civil society? Research and practice show that a combined multisector approach is best; however, such initiatives are often uneven due to questions of sovereignty and citizenship rights. Community-based organisations (CBOs) have emerged to advocate for and serve migrants' social and welfare needs; analysis of CBO projects reveals an uneven application of rights to migrants. Using a comparative case study from Canada, this project contributes to understanding how civil-society helps to activate different types of health care rights for migrants, and to create an informed policy that provides migrant workers with access to a wider range of human and health rights.     

Ausgew?hlte Aspekte einer Bürger- und Patientenorientierung in Deutschland

The growing citizen and patient orientation of the German healthcare system reflects a health policy process which aims to achieve more individual and social responsibility as well as more autonomy on the part of healthcare users. At the same time the process is regarded as an essential component of a future oriented quality development involving raising transparency, developing competence, strengthening patient rights and improving complaints management. Representative data on these parameters and on people's level of satisfaction with their most recent contact with the healthcare service were collected in the 2009 GEDA survey 'Information Behaviour and Self-determination of Citizens and Patients' by the Robert Koch Institute. It reveals knowledge deficits in the population relating to selected areas of the healthcare service and there are also deficits in people's knowledge and assertion of their rights and in the way complaints are handled. These deficits vary according to demographic and socio-economic criteria (age, sex, educational and social status, status vis à vis health insurance companies). It emerges that different population groups have different needs, which can be used for a target group orientation in the communication of knowledge and the development of competencies.     

Playing the game: service users’ management of risk status in a UK medium secure forensic mental health service

In this article we examine how forensic mental health service users actively attempt to manage their risk status through playing the game of containing frustration and demonstrating compliance. The article draws on an observational study (2006 to 2009) which explored the practices of risk assessment and management within one inner city forensic mental health medium secure service in the UK. We used a grounded theory approach to explore service users’ and providers’ experiences of risk assessment and management. We interviewed forensic mental health service users and providers. We also collected data using participant and non-participant observation. Since access to forensic mental health services is tightly controlled, there are participant-observation studies undertaken in these settings.

We found that service users attempted to understand the system of assessment and sought to affect and reduce their risk status by engaging in overt, compliant behaviours. We argue that in doing so service users are active agents in the process of risk management. However, we indicate that there are adverse effects of this approach to risk management as the risk-assessment process is subverted by the restriction of the flow of information, and service users are left with frustrations that they must contain and manage.     

Health care as a universal right

Purpose

Most developed societies recognise the existence of a basic right of access to health care of appropriate quality, considering it a positive welfare right. It can even be one of the most important achievements of pluralistic and secular societies. The main objective of this study is to suggest the foundations for a universal right to health care, meaning the right of access to health care of appropriate quality. A second objective is to propose the necessary tools so that access to health care is viable in a specific commonwealth in accordance with available resources.

Methods

To find this balance between an existing variable geometry and the actual level of resources of each specific commonwealth, the authors suggest the compatibility between Norman Daniels’ “accountability for reasonableness” and the integrated view of health of the World Health Organisation through the “equal opportunity function”.

Results

The equal opportunity function appears to be an ethically acceptable solution for the existing variable geometry because it allows for different levels of provision and promotes an ethical rationing fully respecting accountability for reasonableness.

Conclusion

The basic right of access to health care of appropriate quality is a fundamental humanitarian principle that should be enjoyed by all citizens of all countries, and the international community should recognise the obligation to promote these ideals by any means available. Indeed, although social rights such as health care demand citizens’ solidarity to be enjoyed, only with the universalisation of social rights will humanity be more equal in the future.

     

卫生服务公平的逻辑分析与政策选择

卫生服务公平的内涵是指在同等健康与疾病状况下接受卫生服务的权利公平,并且基本卫生服务需要应该完全平等.卫生服务公平原则的实现需要有相应的社会经济条件作为基础,在当前情况下只能通过建立医疗保障制度,提高卫生服务可得性和可及性,以及补贴基本卫生服务等措施,达到基本卫生需要完全均等的标准.     

Antiretroviral interventions to reduce mother-to-child transmission of human immunodeficiency virus: challenges for health systems, communities and society

This paper examines the ethical, economic and social issues that should be considered when antiretroviral interventions are being planned to reduce mother-to-child transmission of the human immunodeficiency virus. Interventions aiming to reduce mother-to-child transmission should be concerned with the rights of both the child and the mother. Women should not be seen as vectors of transmission but as people entitled to adequate health care and social services in their own right. For women accepting mother-to-child transmission interventions it is important to consider their medical and emotional needs and to ensure that they are not stigmatized or subjected to abuse or abandonment following voluntary counselling and testing. Seropositive women who do not wish to continue with pregnancy should have access to facilities for safe termination if this is legal in the country concerned. Problems arise in relation to the basic requirements for introducing such interventions via the health services in developing countries. A framework is given for making decisions about implementation of interventions in health care systems with limited resources where there is a relatively high prevalence of human immunodeficiency virus infection among pregnant women.     

What could a strengthened right to health bring to the post-2015 health development agenda?: interrogating the role of the minimum core concept in advancing essential global health needs

Background

Global health institutions increasingly recognize that the right to health should guide the formulation of replacement goals for the Millennium Development Goals, which expire in 2015. However, the right to health’s contribution is undercut by the principle of progressive realization, which links provision of health services to available resources, permitting states to deny even basic levels of health coverage domestically and allowing international assistance for health to remain entirely discretionary.

Discussion

To prevent progressive realization from undermining both domestic and international responsibilities towards health, international human rights law institutions developed the idea of non-derogable “minimum core” obligations to provide essential health services. While minimum core obligations have enjoyed some uptake in human rights practice and scholarship, their definition in international law fails to specify which health services should fall within their scope, or to specify wealthy country obligations to assist poorer countries. These definitional gaps undercut the capacity of minimum core obligations to protect essential health needs against inaction, austerity and illegitimate trade-offs in both domestic and global action. If the right to health is to effectively advance essential global health needs in these contexts, weaknesses within the minimum core concept must be resolved through innovative research on social, political and legal conceptualizations of essential health needs.

Summary

We believe that if the minimum core concept is strengthened in these ways, it will produce a more feasible and grounded conception of legally prioritized health needs that could assist in advancing health equity, including by providing a framework rooted in legal obligations to guide the formulation of new health development goals, providing a baseline of essential health services to be protected as a matter of right against governmental claims of scarcity and inadequate international assistance, and empowering civil society to claim fulfillment of their essential health needs from domestic and global decision-makers.

     

Debate: Limitations on universality: the "right to health" and the necessity of legal nationality

Background

The "right to health," including access to basic healthcare, has been recognized as a universal human right through a number of international agreements. Attempts to protect this ideal, however, have relied on states as the guarantor of rights and have subsequently ignored stateless individuals, or those lacking legal nationality in any nation-state. While a legal nationality alone is not sufficient to guarantee that a right to healthcare is accessible, an absence of any legal nationality is almost certainly an obstacle in most cases. There are millions of so-called stateless individuals around the globe who are, in effect, denied medical citizenship in their countries of residence. A central motivating factor for this essay is the fact that statelessness as a concept is largely absent from the medical literature. The goal for this discussion, therefore, is primarily to illustrate the need for further monitoring of health access issues by the medical community, and for a great deal more research into the effects of statelessness upon access to healthcare. This is important both as a theoretical issue, in light of the recognition by many of healthcare as a universal right, as well as an empirical fact that requires further exploration and amelioration.

Discussion

Most discussions of the human right to health assume that every human being has legal nationality, but in reality there are at least 11 to 12 million stateless individuals worldwide who are often unable to access basic healthcare. The examples of the Roma in Europe, the hill tribes of Thailand, and many Palestinians in Israel highlight the negative health impacts associated with statelessness.

Summary

Stateless individuals often face an inability to access the most basic healthcare, much less the "highest attainable standard of health" outlined by international agreements. Rather than presuming nationality, statelessness must be recognized by the medical community. Additionally, it is imperative that stateless populations be recognized, the health of these populations be tracked, and more research conducted to further elaborate upon the connection between statelessness and access to healthcare services, and hence a universal right to health.     

Health literacy and adolescents: a framework and agenda for future research

Health literacy is an important issue in public health today, especially as patients are taking a greater role in obtaining information about their health. Health literacy is commonly defined as 'the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions'. While there is a large body of literature concerning health literacy and adults, few studies have focused on adolescents. Adolescents may have less interaction with the health care system and lower health care costs than adults, but they are increasingly involved with their health care, especially those with chronic illness. They are frequent users of mass media and other technology to access health information and are a target group for many health-related educational interventions. Adolescents are also at a crucial stage of development, learning skills they will carry with them into adulthood. The goal of this paper is to provide a summary of issues justifying the importance of studying health literacy as it relates to adolescents and to provide a framework and suggestions for future research.     

Attending to physical health in mental health services in Australia: a qualitative study of service users’ experiences and expectations

Evidence is unequivocal: the premature death of people with severe mental health problems is attributable primarily to cardiovascular disease, and healthcare provided is often suboptimal. With the overarching aim of improving outcomes, policies and guidelines oblige mental health services and psychiatrists to monitor cardio‐metabolic health of patients and intervene as appropriate. Practice is highly variable; however, with ongoing debate about resourcing and responsibilities dominated by clinicians who have identified disinterest among patients as influencing practice. Seeking to balance discussion, we posed the question ‘what do patients experience and expect of mental health services in relation to their physical health?’ To answer it, we interviewed a convenience sample of 40 service users recruited from a mental health service in Australia, early in 2015. Data were analysed using the framework approach. With few regarding themselves as healthy, participants were commonly concerned about side effects of medication, weight and fitness but rarely mentioned tobacco smoking. Participants’ accounts reinforce extensive research demonstrating variability in attention to physical health in mental health services. Reports by some participants of comprehensive care are encouraging, but widespread uncertainty about reasons for various assessments and denial of requests for management of medication side effects, including weight gain, gives cause for concern. Although participants in this study wanted to improve their health and health‐related quality of life, they acknowledged that their motivation and ability to do so fluctuated with mental health. They expected clinicians to work proactively, especially when symptoms compromised capacity for self‐care, and mental health services to provide or enable access to health‐promoting interventions. Attention should be given, as a matter of priority, to creating conditions (culture and infrastructure) needed to support sustained attention to physical health within services and, importantly, to full engagement of service users in management of their physical health.     

Restorative health: lessening the impact of previous abuse and violence in the lives of vulnerable girls

"Restorative health" is the idea that those who have been denied access to the social determinants of health, particularly as young children, should have the right to restoration of healthy functioning. In interviewing a group of vulnerable young women, ranging in age from 15 to 22, we discovered how they experience the link between health and justice in their lives. Participants were living on the street, in extreme poverty, or both. Traumatic early childhood events continued to affect their ability to function healthy. We conclude and suggest that certain rights-based principles need to ground the development of interventions with this group.     

Profile of Community Mental Health Service Needs in the Moretele District (North-West Province) in South Africa

BACKGROUND: The emergence of democracy in South Africa led to a need to transform all public structures, including the health care system. The aim has been to transform these structures in order to bring them in line with the new culture of human rights. Transformation of the whole health care system is motivated by a number of key objectives, which include achieving equity in resource allocation and health service delivery, developing primary health care infrastructure and decentralising services to promote community participation. AIMS OF THE STUDY: In the context of de-institutionalising mental health services in South Africa, this study aimed to investigate community mental health service needs of mental health service users and that of their families in the Moretele district, North-West province, South Africa. METHODS: The study was conducted in three clinics situated in three different communities in the Moretele district. Data collection consisted of : 147 clinical record reviews, 105 interviews with patients followed by a joint interview with a family member, 83 interviews with caregivers and eight interviews with community key informants (traditional healers, a civic leader, a councillor, a retired teacher, and a physician). RESULTS: The majority of service users were males (54%). The mean age was 41 years and 63% had completed primary schooling.Patients were recorded as having only one of two primary diagnoses, namely schizophrenia (57%) or epilepsy (41%). However, a review of prescribed drugs and caregiver interviews showed that there was a presence of mood disorders among service users. The local hospital was service users primary entry point into the mental health care system, followed by traditional healers (30%). Interviews with service users, service providers and caregivers reveal limited knowledge of patient illness. Nevertheless, service users who had epilepsy were more likely to provide details of their illness than those with mental illness. Above half of service users had basic social skills such as bathing, eating, washing and using public transportation independently. Feelings of loneliness and isolation were common among service users in the community; seventy nine percent (79%), for example spent their days entirely in their homes. Only 7% reported contact with friends. Experiences of community discrimination and exploitation of people with mental illness were reported in key informant interviews and by service users themselves. DISCUSSION: The main community mental health service needs identified in this study were: (i) Improved quality of mental health services at clinics. (ii) Better co-ordination of services (clinic, hospital, social work and traditional healers) and removal of barriers to health service utilisation. (iii) Alleviation of the social isolation of mental health service users by building on existing community structures and individuals willing to engage in partnerships with service providers. The authors indentify a need to train primary health care providers in mental health in order to promote the adequate diagnosis and detection of common psychiatric illnesses.They also point out the need for social support interventions to enable people with mental illness to deal with loneliness and isolation and a need for psycho-educational programmes to make patients and caregivers better informed about mental illness.