There has been much discussion about how to obtain legitimacy at macro-level priority setting in health care by use of fair procedures, but how should we consider priority setting by individual clinicians or health workers at the micro-level? Despite the fact that just health care totally hinges upon their decisions, surprisingly little attention seems being paid to the legitimacy of these decisions. This paper addresses the following question: what are the conditions that have (...) to be met in order to ensure that individual claims on health care are well aligned with an overall concept of just health care? Drawing upon a distinction between individual and aggregated needs, I argue that even though we assume the legitimacy of macro-level guidelines, this legitimacy is not directly transferable to decisions at micro-level simply by adherence to the guidelines’ recommendation. Further, I argue that individual claims are subject to the formal principle of equality and the demands of vertical and horizontal equity in a way that gives context- and patient-related equity concerns precedence over equity concerns captured at the macro-level. I conclude that if we aim to achieve just health care, we need to develop a complementary framework for legitimising individual judgment of patients’ claims on health care resources. Moreover, I suggest the basic structure of such a framework. (shrink)

All health care systems face problems of justice and efficiency related to setting priorities for allocating a limited pool of resources to a population. Because many of the central issues are the same in all systems, the United States and other countries can learn from the successes and failures of countries that have explicitly addressed the question of health care priorities. We review explicit priority setting efforts in Norway, Sweden, Israel, the Netherlands, Denmark, New Zealand, (...) the United Kingdom and the state of Oregon in the US. The approaches used can be divided into those centered on outlining principles versus those that define practices. In order to establish the main lessons from their experiences we consider the process each country used, criteria to judge the success of these efforts, which approaches seem to have met these criteria, and using their successes and failures as a guide, how to proceed in setting priorities. We demonstrate that there is little evidence that establishment of a values framework for priority setting has had any effect on health policy, nor is there evidence that priority setting exercises have led to the envisaged ideal of an open and participatory public involvement in decision making. (shrink)

The Scandinavian welfare states have public health care systems which have universal coverage and traditionally low influence of private insurance and private provision. Due to raises in costs, elaborate public control of health care, and a significant technological development in health care, priority setting came on the public agenda comparatively early in the Scandinavian countries. The development of health care priority setting has been partly homogeneous and appears to follow certain phases. This (...) can be of broader interest as it may shed light on alternative models and strategies in health care priority setting. Some general trends have been identified: from principles to procedures, from closed to open processes, and from experts to participation. Five general approaches have been recognized: The moral principles and values based approach, the moral principles and economic assessment approach, the procedural approach, the expert based practice defining approach, and the participatory practice defining approach. There are pros and cons with all of these approaches. For the time being the fifth approach appears attractive, but its lack of true participation and the lack of clear success criteria may pose significant challenges in the future. (shrink)

Explicit forms of rationing have already been implemented in some countries, and many of these prioritization systems resort to Norman Daniels’ “accountability for reasonableness” methodology. However, a question still remains: is “accountability for reasonableness” not only legitimate but also fair? The objective of this paper is to try to adjust “accountability for reasonableness” to the World Health Organization’s holistic view of health and propose an evolutionary perspective in relation to the “normal” functioning standard proposed by Norman Daniels. To (...) accomplish this purpose the authors depart from the “normal” functioning standard to a model that promotes effective opportunity for everyone in health care access, because even within the “normal” functioning criteria some treatments and medical interventions should have priority upon others. Equal opportunity function is a mathematical function that helps to hierarchize moral relevant necessities in health care according to this point of view. It is concluded, first, that accountability for reasonableness is an extremely valuable tool to address the issue of setting limits in health care; second, that what is called in this paper “equal opportunity function” might reflect how accountability for reasonableness results in fair limit-setting decisions; and third, that this methodology must be further specified to best achieve fair limit-setting decisions. Indeed, when resources are especially scarce the methodology suggested in this paper might allow not only prioritizing in an “all or nothing” basis but can contribute to a hierarchy system of priorities in health care. (shrink)

Priority setting (also known as resource allocation or rationing) occurs at every level of every health system and is one of the most significant health care policy questions of the 21st century. Because it is so prevalent and context specific, improving priority setting in a health system entails improving it in the institutions that constitute the system. But, how should this be done? Normative approaches are necessary because they help identify key values that (...) clarify policy choices, but insufficient because different approaches lead to different conclusions and there is no consensus about which ones are correct, and they are too abstract to be directly used in actual decision making. Empirical approaches are necessary because they help to identify what is being done and what can be done, but are insufficient because they cannot identify what should be done. Moreover, to be really helpful, an improvement strategy must utilize rigorous research methods that are able to analyze and capture experience so that past problems are corrected and lessons can be shared with others. Therefore, a constructive, practical and accessible improvement strategy must be research-based and combine both normative and empirical methods. In this paper we propose a research-based improvement strategy that involves combining three linked methods: case study research to describe priority setting; interdisciplinary research to evaluate the description using an ethical framework; and action research to improve priority setting. This describe-evaluate-improve strategy is a generalizable method that can be used in different health care institutions to improve priority setting in that context. (shrink)

During the last decade a “technical” approach has become increasingly influential in health care priority setting. The various country reports illustrate, however, that non-technical considerations cannot be avoided. As they often remain implicit in health care package decisions, this paper aims to make these normative judgements an explicit part of the procedure. More specifically, it aims to integrate different models of distributive justice as well as the principle of solidarity in four different phases of a decision-making (...) procedure, and to identify important moral choices which present themselves. First four important justice models are discussed, then a justification is given for their inclusion in a four-step decision making procedure. This is followed by a discussion of different justice and solidarity problems—with their inherent conceptual difficulties in each of these stages. The paper concludes with a summary of the major moral choices that are to be made in health care package decisions. (shrink)

This paper develops an account of the normative basis of priority setting in health care as combining the values which a given society holds for the common good of its members, with the universal provided by a principle of common humanity. We discuss national differences in health basket in Europe and argue that health care decision-making in complex social and moral frameworks is best thought of as anchored in such a principle by drawing on the (...) philosophy of need. We show that health care needs are ethically ‘thick’ needs whose psychological and social construction can best be understood in terms of David Wiggins’s notion of vital need: a person’s need is vital when failure to meet it leads to their harm and suffering. The moral dimension of priority setting which operates across different societies’ health care systems is located in the demands both of and on any society to avoid harm to its members. (shrink)

The focus of the study is the conflict between care and concern for particular patients, versus considerations that take impartial considerations of justice to be central to moral deliberations. To examine these questions we have conducted qualitative interviews with health professionals in Norwegian hospitals. We found a value norm that implicitly seemed to overrule all others, the norm of ‘making a difference for the patients’. We will examine what such a statement implies, aiming to shed some light over moral (...) dilemmas interwoven in bedside rationing. (shrink)

The experience of Costa Rica highlights the potential for conflicts between the right to health and fair priority setting. For example, one study found that most favorable rulings by the Costa Rican constitutional court concerning claims for medications under the right to health were either for experimental treatments or for medicines that should have low priority based on health gain per unit of expenditure and severity of disease. In order to better align rulings with (...) priority setting criteria, in 2014, the court initiated a reform in its assessment of claims for medicine. This paper assesses this reform’s impact on the fairness of resource allocation. It finds three effects. First, a reduction in successful claims for experimental medication, which is beneficial. Second, an increase in the success rate of medication lawsuits, which is detrimental because most claims are for extremely cost-ineffective medications. Third, a decline in the number of claims for medicine, which is beneficial because it forestalls such low-priority spending. This paper estimates that, taking all three effects into account, the reform has had a modest net positive impact on overall resource allocation. However, it also argues that there is a need for further reforms to lower the number of claims to low-priority medicines that are granted. (shrink)

Priority setting presents one of the biggest challenges policy makers in low-income countries have to deal with on a daily basis. Extreme lack of resources in these contexts introduces non-state stakeholders whose priorities may not necessarily reflect the national priorities. This raises concerns about the legitimacy of the non-state stakeholders' involvement in priority setting. To date, the meagre literature on priority setting in low-income countries has not focused on the question of the legitimacy of (...) the non-state stakeholders, specifically, the development partners. This article fills this gap in the literature. We provide an overview of some of the health sector priority setting approaches, of relevance to low-income countries, including the processes, the stakeholders and their roles, and the priority setting challenges. These factors are explored, in-depth, using the case of Uganda. The sources of legitimacy of development assistance partners' involvement in priority setting is assessed based on current literature on sources of legitimacy and legitimacy in priority setting. The article concludes that both the government and development assistance partners need to work together to foster and maintain their legitimacy through; having fair priority setting processes with wide representation of all relevant stakeholders, explicit priority setting processes and a balance of decision making powers with commitment to accountability and transparency. (shrink)

Germany has just started a public debate on priority-setting, rationing and cost-effectiveness due to the cost explosion within the German health care system. To date, the costs for German health care run at 11,6 % of its Gross Domestic Product (GDP, 278,3 billion €) that represents a significant increase from the 5,9 % levels present in 1970. In response, the German Parliament has enacted several major and minor legal reforms over the last three decades for the (...) sake of cost containment and maintaining stability of the health care system. The Statutory Health Insurance—SHI (Gesetzliche Krankenversicherung—GKV) is based on the fundamental principle of solidarity and provides an ethical and legal framework for implementing equity, comprehensiveness and setting the principles and rules for financing and providing health care services and benefits. Within the SHI system, several major actors can be identified: the Federal Ministry of Health, the 16 state ministries of health, the Federal Joint Committee (G-BA), the physicians (with their associations) and the hospitals (with their organizations) on the provider side, and the sickness funds with their associations on the purchasers’ side. This article reviews the structure and complexities of the German health care system with its major players and participants. The focus will be put on relevant ethical, legal and economic aspects for prioritization, rationalization, rationing and cost-effectiveness of medical benefits and services. In conclusion, this article pleads for open discussion on the challenging subject of priority-setting instead of accepting the implicit and non-transparent rationing of medical services that currently occurs at many different levels within the health care system, as it stands today. (shrink)

Because the demand for health services outstrips the available resources, priority setting is one of the most difficult issues faced by health policy makers, particularly those in developing countries. Priority setting in developing countries is fraught with uncertainty due to lack of credible information, weak priority setting institutions, and unclear priority setting processes. Efforts to improve priority setting in these contexts have focused on providing information and tools. In (...) this paper we argue that priority setting is a value laden and political process, and although important, the available information and tools are not sufficient to address the priority setting challenges in developing countries. Additional complementary efforts are required. Hence, a strategy to improve priority setting in developing countries should also include: (i) capturing current priority setting practices, (ii) improving the legitimacy and capacity of institutions that set priorities, and (iii) developing fair priority setting processes. (shrink)

Priority setting remains a big challenge for health managers and planners, yet there is paucity of literature on evaluating priority setting. The purpose of this paper is to present a framework for evaluating priority setting in low and middle income countries. We conducted a qualitative study involving a review of literature and Delphi interviews with respondents knowledgeable of priority setting in low and middle income countries. Respondents were asked to identify the (...) measures of successful priority setting in low and middle income countries. Responses were grouped as: immediate internal or external/delayed internal or external. We also identified some pre-requisites for successful priority setting. The immediate internal measures included increased efficiency in decision making, improved quality of decisions and fairer priority setting. Immediate External measures included—improved public understanding and acceptance of decisions, increased public participation, increased trust. Delayed Internal measures included increased satisfaction, understanding, compliance, balanced budget, achievement of organization goals, and improved internal accountability. Delayed External measures include impact on policy and practice, improved population health and reduction of health inequalities, achievement of health system goals and strengthening of health care systems. Identified pre-requisites for successful priority setting included; the presence of credible priority setting institutions, incentives for participation and implementation and resources, capacity and political will to implement. These would be augmented in a conducive political, social and economic context. This framework, although not exhaustive, provides a practical basis for planning and evaluating priority setting in low and middle income countries. (shrink)

The prelims comprise: The Scope of Public Health: Challenges and Choices Health Care Justice and Public Health: When Is Enough Enough? Setting Public Health Priorities Justly: The Limits of Moral Theory References.

Engaging citizens is vital to achieving people‐centred health research. This paper aims to put attention to dynamics of power and dynamics of difference back at the centre of citizen engagement in health research priority‐setting. Without attention to power and difference, engagement can lead to presence without voice and voice without influence, particularly for disadvantaged and marginalised groups. By analysing six key bodies of literature, the paper first identifies the different components of engagement—who initiates, for what purpose, (...) who participates, and how they participate—and the dynamics of power and dynamics of difference relevant to them. For each component of engagement, the ethical considerations relating to those dimensions of power and dimensions of difference are characterised for the research priority‐setting context and preliminary guidance on how they might be addressed is provided. An initial framework comprised of a series of questions reflecting these ethical considerations has been developed for use by researchers and citizens when designing engagement processes for research projects. Where researchers and citizens attend to the framework's questions and then revise their priority‐setting processes’ design to better represent diversity and mitigate power disparities, more inclusive citizen engagement is promoted. Disadvantaged and marginalised groups are more likely to be present and heard, which, in turn, will help generate research projects with topics and questions that encompass and more accurately reflect their health needs. (shrink)

Much research aimed at developing measures for normative criteria to guide the assessment of healthcare resource allocation decisions has focused on health maximization, equity concerns and more recently approaches based on health capabilities. However, a widely embraced idea is that health resources should be allocated to meet health needs. Little attention has been given to the principle of need which is often mentioned as an alternative independent criteria that could be used to guide healthcare evaluations. This (...) paper develops a model and indicator of need satisfaction that aggregates the health needs of a population in a particular time period into a single measure that weights individual health needs by the severity of their ill health. The paper provides a first step towards formalizing the principle of need as a measurable objective for healthcare policy and we discuss some challenges for future research, including incorporating the duration of time into need-based health evaluations. (shrink)

Der Aufsatz widmet sich dem Wohlfahrtseffekt öffentlicher Ausgaben unter besonderer Berücksichtigung der Bereiche Gesundheitswesen und Bildungswesen. Ausgangspunkt ist die Feststellung des bemerkenswert geringen Ertrags hoher Aufwendungen für öffentliche Gesundheit, der insbesondere im Vergleich von Ländern mit teils deutlich variierenden Gesundheitsbudgets auffällt. Da das Gesundheitswesen aufgrund der Opportunitätskostenproblematik mit anderen Bereichen sozialpolitischer Sicherheitsgewähr um knappe öffentliche Mittel konkurriert, ist darauf zu achten, dass deren Allokation bestmöglich optimiert wird. Im deutschen Fall mit seinem ungewöhnlich hohen Anteil öffentlicher Gesundheitsausgaben legt das eine Verschiebung (...) der Prioritäten zugunsten des Bildungswesens nahe, wofür neben potentiellen Verbesserungen des Gesundheitsstatus der Bevölkerung und funktionalen, die gesellschaftliche Integration betreffenden Erwägungen auch solche der sozialen Gerechtigkeit sprechen. Ein Programm zur Reformierung des Gesundheitswesens, das diesen Leitlinien folgt, wird skizziert. (shrink)

BackgroundThe idea that individuals are responsible for their health has been the focus of debate in the theoretical literature and in its concrete application to healthcare policy in many countries. Controversies persist regarding the form, substance and fairness of allocating health responsibility to the individual, particularly in universal, need-based healthcare systems.ObjectiveTo examine how personal health responsibility has been framed and rationalised in Norwegian key policy documents on priority setting.MethodsDocuments issued or published by the Ministry of (...) Health and Care Services between 1987 and 2018 were thematically analysed. We developed a predefined conceptual framework that guided the analysis. The framework included: the subject and object of responsibility, the level of conceptual abstraction, temporality, normative justificatory arguments and objections to the application of personal health responsibility.ResultsAs an additional criterion, personal health responsibility has been interpreted as relevant if: the patient’s harmful behaviour is repeated after receiving treatment, and if the success of the treatment is conditional on the patient’s behavioural change. When discussed as a retrospective criterion, considerations of reciprocal fairness have been dominant. When discussed as a prospective criterion, the expected benefit of treatment justified its relevance.ConclusionPersonal health responsibility appears to challenge core values of equality, inclusion and solidarity in the Norwegian context and has been repeatedly rejected as a necessary criterion for priority setting. However, the responsibility criterion seems to have some relevance in particular priority setting decisions. (shrink)

Global health is at a crossroads. The 2030 Agenda for Sustainable Development has come with ambitious targets for health and health services worldwide. To reach these targets, many more billions of dollars need to be spent on health. However, development assistance for health has plateaued and domestic funding on health in most countries is growing at rates too low to close the financing gap. National and international decision-makers face tough choices about how scarce (...) class='Hi'>health care resources should be spent. Should additional funds be spent on primary prevention of stroke, treating childhood cancer, or expanding treatment for HIV/AIDS? Should health coverage decisions take into account the effects of illness on productivity, household finances, and children's educational attainment, or just focus on health outcomes? Does age matter for priority setting or should it be ignored? Are health gains far in the future less important than gains in the present? Should higher priority be given to people who are sicker or poorer? Global Health Priority-Setting provides a framework for how to think about evidence-based priority-setting in health. Over 18 chapters, ethicists, philosophers, economists, policy-makers, and clinicians from around the world assess the state of current practice in national and global priority setting, describe new tools and methodologies to address establishing global health priorities, and tackle the most important ethical questions that decision-makers must consider in allocating health resources. (shrink)

Bioethics, Volume 36, Issue 5, Page 500-510, June 2022.

As health policy-makers around the world seek to make progress towards universal health coverage, they must navigate between two important ethical imperatives: to set national spending priorities fairly and efficiently; and to safeguard the right to health. These imperatives can conflict, leading some to conclude that rights-based approaches present a disruptive influence on health policy, hindering states’ efforts to set priorities fairly and efficiently. Here, we challenge this perception. We argue first that these points of tension (...) stem largely from inadequate interpretations of the aims of priority setting as well as the right to health. We then discuss various ways in which the right to health complements traditional concerns of priority setting and vice versa. Finally, we set out a three-step process by which policy-makers may navigate the ethical and legal considerations at play. (shrink)

In decisions about inclusion (or exclusion) of health care services in the benefit package, different interpretations of notions like health, health risk, disease, quality of life or necessary care often remain implicit. Yet they can lead to different benefit package decisions. After a brief discussion of these concepts in definitions of the goals of medicine, the various value-judgements implicit in interpretations of key notions in health care are analysed and conclusions are drawn with regard to the (...) composition of decision making bodies at various levels. It is further argued that such a body needs to discuss the various interpretations of key-notions explicitly in the various phases of a priority-setting procedure so that more consistent choices can be made in health care priority setting. (shrink)

The authors were involved in developing an ethical framework to assist the Queens Region Board (Prince Edward Island, Canada) set priorities in health and health care. Two and one half years after the adoption of this framework, the authors undertook an evaluation of the framework. This paper will discuss: a) the historical background of regionalization in Canada, and in particular the circumstances leading up to the institution of regional boards in Prince Edward Island; b) the sorts of ethical (...) issues facing the Queens Regional Board; c) issues arising in connection with the use and development of ethics frameworks for managing ethical issues in priority setting; d) the framework adopted by the Queens Board and the process that led to its development; e) issues arising as concerns implementation of the framework; f) questions and issues pertinent to other boards and bodies considering similar initiatives. (shrink)

In Norway, priority for health interventions is assigned on the basis of three official criteria: health benefit, resources, and severity. Responses to the COVID-19 pandemic have mainly happened through intersectoral public health efforts such as lockdowns, quarantines, information campaigns, social distancing and, more recently, vaccine distribution. The aim of this article is to evaluate potential priority setting criteria for public health interventions. We argue in favour of the following three criteria for public (...) class='Hi'>health priority setting: benefit, resources and improving the well-being of the worse off. We argue that benefits and priority to the worse off may reasonably be understood in terms of individual well-being, rather than only health, for public health priority setting. We argue that lessons from the COVID-19 pandemic support our conclusions. Keywords: COVID-19, Prioritarianism, Priority Setting, Public Health, Severity. (shrink)

The vast majority of health research resources are used to study conditions that affect a small, advantaged portion of the global population. This distribution has been widely criticized as inequitable and threatens to exacerbate health disparities. However, there has been little systematic work on what individual health research funders ought to do in response. In this article, we analyze the general and special duties of research funders to the different populations that might benefit from health research. (...) We assess how these duties apply to governmental, multilateral, nonprofit, and for-profit organizations. We thereby derive a framework for how different types of funders should take the beneficiaries of research into account when they allocate scarce research resources. (shrink)

In this paper we explore the relation between health-care needs and patients’ desires within shared decision-making in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and discuss a (...) number of queries which seem to arise due to the double focus on a patient’s need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine. (shrink)

Priority setting in health care is ubiquitous and health authorities are increasingly recognising the need for priority setting guidelines to ensure efficient, fair, and equitable resource allocation. While cost-effectiveness concerns seem to dominate many policies, the tension between utilitarian and deontological concerns is salient to many, and various severity criteria appear to fill this gap. Severity, then, must be subjected to rigorous ethical and philosophical analysis. Here we first give a brief history of the (...) path to today’s severity criteria in Norway and Sweden. The Scandinavian perspective on severity might be conducive to the international discussion, given its long-standing use as a priority setting criterion, despite having reached rather different conclusions so far. We then argue that severity can be viewed as a multidimensional concept, drawing on accounts of need, urgency, fairness, duty to save lives, and human dignity. Such concerns will often be relative to local mores, and the weighting placed on the various dimensions cannot be expected to be fixed. Thirdly, we present what we think are the most pertinent questions to answer about severity in order to facilitate decision making in the coming years of increased scarcity, and to further the understanding of underlying assumptions and values that go into these decisions. We conclude that severity is poorly understood, and that the topic needs substantial further inquiry; thus we hope this article may set a challenging and important research agenda. (shrink)

Priority setting in health care means making distributional decisions, which inherently involves limiting access to some health services. Public health ethics involves many ethical principles like efficiency, equity and individual choice, which are frequently appealed to but rarely analysed. How these concepts are understood and applied impacts on healthcare planning and delivery policies. This article discusses findings of a research study undertaken in the context of the Iranian health system in which two main ethical (...) values appear to be operating: equity and personal choice. It asserts that the pro-market perspective, driven by individual choice appears to be dominant as it is influenced by the powerful medical profession. This is despite egalitarian intentions proclaimed in the Constitution and the majority of national laws. The study argues that the market influence in healthcare priority setting is unlikely to diminish because of weak implementation of existing laws. In conclusion, the article suggests that the private health sector could help to achieve the state’s proclaimed egalitarian goals only if new regulatory systems and new systems of governance are implemented. Such measures should be aimed at monitoring and controlling the performance of the private sector, to better manage and harness its capacities. (shrink)

In health care priority setting different criteria are used to reflect the relevant values that should guide decision-making. During recent years there has been a development of value frameworks implying the use of multiple criteria, a development that has not been accompanied by a structured conceptual and normative analysis of how different criteria relate to each other and to underlying normative considerations. Examples of such criteria are unmet need and severity. In this article these crucial criteria are (...) conceptually clarified and analyzed in relation to each other. We argue that disease-severity and condition-severity should be distinguished and we find the latter concept better reflects underlying normative values. We further argue that unmet need does not fulfil an independent and relevant role in relation to condition-severity except for in some limited situations when having to distinguish between conditions of equal severity. (shrink)

Two principles form the basis for much priority setting in health. According to the greater benefit principle, resources should be directed toward the intervention with the greater health benefit. According to the worse off principle, resources should be directed toward the intervention benefiting those initially worse off. Jointly, these principles accord with so-called prioritarianism. Crucial for its operationalisation is the specification of the worse off. In this paper, we examine how the worse off can be defined (...) as those with the fewer lifetime Quality-Adjusted Life Years (QALYs). We contrast this proposal with several alternative specifications. (shrink)

Most public and non-profit organisations that fund health research provide the majority of their funding in the form of grants. The calls for grant applications are often untargeted, such that a wide variety of applications may compete for the same funding. The grant review process therefore plays a critical role in determining how limited research resources are allocated. Despite this, little attention has been paid to whether grant review criteria align with widely endorsed ethical criteria for allocating health (...) research resources. Here, we analyse the criteria and processes that ten of the largest public and non-profit research funders use to choose between competing grant applications. Our data suggest that research funders rarely instruct reviewers to consider disease burden or to prioritise research for sicker or more disadvantaged populations, and typically only include scientists in the review processes. This is liable to undermine efforts to link research funding to health needs. (shrink)

Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a (...) priority. These pertain to public values, luck egalitarian distributive justice the epistemic difficulties of obtaining knowledge about rare diseases and the incentives created by a higher willingness to pay. The first is at odds with our knowledge regarding popular opinion. The three other arguments may provide a reason to fund rare diseases generously. However, they are either overinclusive because they would also justify funding for many non-rare diseases or underinclusive in the sense of justifying priority for only some rare diseases. The arguments thus fail to provide a justification that tracks rareness as such. There are no data in this work. (shrink)

In this article I analyse and discuss guidelines for priority setting in crisis management at a regional level in Sweden. The guidelines concern three types of crises: pandemics, large losses of electric power and interruptions in water supply. Pandemics are typical public health issues. Large losses of electric power and interruptions in water supply are in themselves not, but may have serious public health consequences. These guidelines are compared with guidelines for priority setting in (...) health care. This is done because of the central position of health care in the management of many different types of crises. The comparison shows clear differences. In the analysis, I use a distinction between substantive principles of priority setting and process-oriented principles. Regarding substantive principles, I have found that the guidelines point in different directions. This seems acceptable, however, since they focus on different problems. Moreover, it seems possible to integrate the various context-dependent principles by relating them to higher order principles. Regarding process-oriented principles, I have found that how and to what extent these principles are applied in the guidelines vary. If we want to apply these principles in a more satisfying way, this would require a more systematic approach. (shrink)

A critical element in building stronger health systems involves strengthening good governance to build capacity for transparent and fair health planning and priority setting. Over the past 20 years, the ethical framework Accountability for Reasonableness has been a prominent conceptual guide in strengthening fair and legitimate processes of health decision-making. While many of the principles embedded within the framework are congruent with Western conceptualizations of what constitutes procedural fairness, there is a paucity in the literature (...) that captures the degree of resonance between these principles and the views of decision makers from non-Western settings; particularly in Africa, where many countries have only recently, within the last 20-30 years, become more democratic. This paper contributes to the ethics literature by examining how Ethiopian decision makers conceptualize fair and legitimate health decision-making, and reflects on the degree of conceptual resonance between these views and the principles embedded in A4R. A qualitative case study approach from three districts in Ethiopia was undertaken. Fifty-eight decision makers from district, regional, zonal, and national levels were interviewed to describe their conceptualization of fairness and legitimacy in the district health planning process. Findings revealed that Ethiopians have a broad conception of fairness and legitimacy that while congruent with procedural justice, also aligned with principles of distributive and organizational justice. Researchers and practitioners seeking to strengthen procedural fairness in health priority setting must therefore recognize the significance of other philosophical dimensions influencing how fairness and legitimacy of health decision-making are constructed within the Ethiopian setting. (shrink)

It is uncontroversial to claim that the extent to which health care interventions benefit patients is a relevant consideration for health care priority setting. However, when effects accrue to the individual patient, effects of a more indirect kind may accrue to other individuals as well, such as the patient's children, friends, or partner. If, and if so how, such relational effects should be considered relevant in priority setting is contentious. In this paper, we illustrate (...) this question by using disease‐modifying drugs for Alzheimer's disease as a case in point. The ethical analysis begins by sketching the so‐called prima facie case for ascribing moral weight to relational effects and then moves on to consider a number of objections to it. We argue that, whereas one set of objections may be dismissed, there is another set of arguments that poses more serious challenges for including relational effects in priority setting. (shrink)

The study examined the question of who should make decisions for a National Health Scheme about the allocation of health resources when the health states of beneficiaries could change because of adaptation. Eight semi-structured small group discussions were conducted. Following focus group theory, interviews commenced with general questions followed by transition questions and ended with a ‘focus’ or ‘key’ question. Participants were presented with several scenarios in which patients adapted to their health states. They were then (...) asked their views about the appropriate role of the public, patients and health professionals in making social judgements of quality of life. After discussion and debate, all groups were asked the key question: ‘In light of adaptation, who should evaluate quality of life for the purpose of setting priorities in the allocation of health care?’ In all groups participants presented strong arguments for and against decision making by patients, the public and health professionals. However, most groups thought a representative body which included a range of perspectives should make the relevant judgements. This is at odds with the recommendations in most national pharmaceutical guidelines. The main conclusion of the paper is that health economists and other researchers should explore the possibility of adopting a deliberative, consensus-based approach to evaluating health-related quality of life when such judgements are to be used to inform priority setting in a public system. (shrink)

The vision of global health with justice which Larry Gostin articulates in his book Global Health Law envisages a switch to ‘upstream’ priority-setting for expenditure on health, with a focus upon social determinants and a goal of redressing health inequalities. This article explores what is meant by this proposal and offers a critical evaluation of it. It is argued that difficulties arise in respect of the ethical and evidential bases for such an approach to (...) the setting of priorities, while significant challenges may also arise in the necessary modification of structures of governance. (shrink)

Health-care goods are goods with peculiar properties, and where they are scarce, societies face potentially explosive distributional conflicts. Animated public and academic debates on the necessity and possible justice of limit-setting in health care have taken place in the last decades and have recently taken a turn toward procedural rather than substantial criteria for justice. This article argues that the most influential account of procedural justice in health-care rationing, presented by Daniels and Sabin, is indeterminate where (...) concrete properties of rationing institutions are concerned. Such properties inscribe substantial norms into institutions. These norms can derive validity only from democratic majority decisions, which must be seen as an instance of pure procedural justice. We therefore have to move the discussion to a meta-level and ask how concrete properties of institutions are being chosen. I suggest four criteria for sufficiently democratic institutional design choice and conclude that as institutional properties are likely to have effects on the resulting distribution of health care, design choices should be empirically informed and taken both democratically and deliberately. (shrink)

BackgroundCommunities’ engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. However, without attention to dynamics of power and diversity, their engagement can be tokenistic. So far, there remains limited ethical guidance on how to share power with communities, particularly those considered disadvantaged and marginalised, in global health research priority-setting. This paper generates a comprehensive, empirically-based “ethical toolkit” to provide such guidance, further strengthening a previously (...) proposed checklist version of the toolkit. The toolkit places community engagement and power-sharing at the heart of priority-setting for global health research projects.MethodsA two part method was used to generate a revised toolkit. Part one was conceptual, consisting of novel analysis of empirical data (previously collected as part of the same overall project) to identify additional concepts relevant to power-sharing between researchers and communities in global health research priority-setting. Part two was empirical, seeking feedback on the initial checklist version of the toolkit in interviews with researchers, ethicists, community engagement practitioners, and community organisation staff.ResultsThe conceptual process identified two additional components of engagement and six additional features that affect who defines, who participates, and who is heard in research priority-setting. New ethical considerations related to sharing power in global health research priority-setting are articulated in relation to those components and features. Interviewees provided suggestions for revising the toolkit’s content and language. The implications of these suggestions and the analytic process for the toolkit are described.ConclusionsThe resultant toolkit is a reflective project planning aid for researchers and their community partners to employ before priority-setting is undertaken for global health research projects. It consists of three worksheets (to be completed collectively) and a companion document detailing how to use them. It is more comprehensive than the initial toolkit, as worksheet questions for discussion cover all phases of priority-setting. (shrink)

Testimonial injustice occurs when bias against the credibility of certain social identities results in discounting of their contributions to deliberations. In this analysis, we describe testimonial injustice against women and how it figures in macroallocation procedure. We show how it harms women as deliberators, undermines the objective of inclusivity in macroallocation and affects the justice of resource distributions. We suggest that remedial action is warranted in order to limit the effects of testimonial injustice in this context, especially on marginalised and (...) disadvantaged groups, and propose three areas for action, whose implementation might feasibly be achieved by those immediately involved in macroallocation. (shrink)

How to handle orphan drugs for rare diseases is a pressing problem in current health-care. Due to the group size of patients affecting the cost of treatment, they risk being disadvantaged in relation to existing cost-effectiveness thresholds. In an article by Niklas Juth it has been argued that it is irrelevant to take indirectly operative factors like group size into account since such a compensation would risk discounting the use of cost, a relevant factor, altogether. In this article we (...) analyze Juth’s argument and observe that we already do compensate for indirectly operative factors, both outside and within cost-effectiveness evaluations, for formal equality reasons. Based on this we argue that we have reason to set cost-effectiveness thresholds to integrate equity concerns also including formal equality considerations. We find no reason not to compensate for group size to the extent we already compensate for other factors. Moreover, groups size implying a systematic disadvantage also on a global scale, i.e. taking different aspects of the health condition of patients suffering from rare diseases into account, will provide strong reason for why group size is indeed relevant to compensate for. (shrink)

The purpose of this paper is to discuss the accountability for reasonableness and its four conditions. This explains the priority setting and resource allocation for scarce resources. In this article it is discussed that how the scarce resources in a developing country like Pakistan be allocated in health care. This is explained with the help of case scenario.