scholarly journals Patients as equal partners in decision-making: The global reality

2018 ◽  
Vol 8 (1) ◽  
Author(s):  
Anubha Taneja Mukherjee

Decision making is an inherently complicated procedure, which by its very nature requires the decision-maker to co-opt all the stakeholders concerned. The procedure of decision-making may vary from country to country, depending on its size, culture, history and special demographic circumstances. Around the world, key decision-makers include the executive, the legislature and the judiciary. While the distribution of powers between these three may vary in tandem with their relation to each other, their roles remain the same. While the legislature enacts laws for its citizens, the executive, popularly known as the government, implements these laws and while doing so promulgates policies that are in alignment with the said laws. Mostly, the executive is also authorised to promulgate some laws of its own. The judiciary, on the other hand, comes into the picture when there is a dispute with regard to such laws. It also steps in on its own at times. While settling such disputes, the judiciary also ends up setting what we know as precedents, which also become a part of the legal fabric of a society. In a nutshell, these three are the key decision makers in any country. As mentioned above, while making decisions, these authorities are mostly required to co-opt all the stakeholders concerned, thereby making decision making a consultative process. These stakeholders include think tanks, research bodies, media and most importantly the affected party. The reason for having such a consultative procedure in place is that the decision makers are not experts in every subject or issue that comes their way. For instance, when a need to promulgate a national policy on thalassemia presents itself to a certain government, whether it be owing to media reportage or representations from the civil society, the decision makers will look towards people considered to be the experts in the subject to come forward and be a part of the policy making. One could say that this sounds like an ideal situation where the government actually invites people concerned with thalassemia to come forward and share views about it for the purpose of policy making. It is, however, true! It is as true for India as it is for any developed country. What we must ensure then is that the government or the decision maker considers us, the patients, as the experts. While it does sound obvious that those impacted with the disorder would be the ones with the first-hand knowledge about the disorder, the very fact that there is a topic in this conference on the role of patients in decision making speaks volumes about the distance that remains to be covered by the patients of thalassemia as far as participation in decision-making is concerned. With the massive strides in the field of medical science and the unflinching support of organisations like Thalassemia International Federation (TIF), we have now reached the stage where we must step out of the victim mode and represent ourselves before the decision-makers, whether by forming Patients Advocacy Groups or otherwise. One may take cue from various associations around the world. Global HD Organisations are a good example. They are known to have got together to give patients a voice in clinical research. The most popular strategy for reaching out to the decision makers is to unite, engage, and partner both in private meetings and consultative fora like events, task forces and projects. “Unite, Engage & Partner” can therefore be the most successful mantra for engaging with the decision makers. Talking of examples of advocacy and participation by patients, while there are numerous examples in Europe and North America of the power of patient advocacy so much so that patients are on the same level as doctors when it comes to voicing opinions in policy making, TIF on an international level has created since 2009 the Expert Patients Programme, and is now moving forward in giving patients a voice through its educational platform. Recently, India also launched its first Thalassemia Patients Advocacy Group (PAG) in the august presence of the Deputy Chief Minister of the capital of the country. The India PAG has seven patients from the fields of law, psychology, education and IT. The Group is already involved with the government on the formulation of the National Thalassemia Policy. This is a great start and this should give enough and more encouragement to thalassemics across the world to UNITE, ENGAGE AND PARTNER in the process that impacts them the most – decision-making!

2018 ◽  
Vol III (I) ◽  
pp. 71-80
Author(s):  
Muhammad Zia-Ur Rehman ◽  
Zahid Bashir ◽  
Asia Baig

This study focuses on Economic turmoil due to issues of the Middle East and its relation to oil prices, hence transposing the crisis to other economies of the world. A qualitative and logical resigning technique is used during the study. The author finds that the Middle East has a lot of issues related to oil prices, oil production. Most important are wars and conflicts within the region, terrorism, radicalism, the influence of US in the region, week government, and issues of politics. This study provides information to the government in policy making, in investment decisions, in politics and in financial decision making related to oil prices and its production in the region


2004 ◽  
Vol 9 (3) ◽  
pp. 1-17 ◽  
Author(s):  
Mike Williams

New Labour's conceptualisation of public participation in local government creates a tension in public participation practice. Government legislation and guidance require local authorities to develop and provide citizen-centred services, engage the public in policy-making and respond to the public's views. Seen in this light, New Labour policy draws from radical democratic discourse. However, local authority staff are also expected to act in accordance with the direction set by their line managers, the Council and the government and to inform, engage and persuade the public of the benefit of their authority's policies. In this respect, New Labour policy draws from the discursive model of civil society, conceptualising public participation as a method for engendering civil ownership of the formal structures of representative democracy. Tension is likely to arise when the ideas, opinions and values of the local authority differ from those expressed by the participating public. This paper uses a local ‘public participation’ initiative to investigate how the tension is managed in practice. The study shows how decision-makers dealt with the tension by using participatory initiatives to supply information, understand the views of the public and encourage public support around pre-existing organisational agendas. Problems occurred when citizens introduced new agendas by breaking or manipulating the rules of participation. Decision-makers responded by using a number of distinctive methods for managing citizens’ agendas, some of which were accompanied by strategies for minimising the injury done to citizens’ motivations for further participation. The paper concludes that New Labour policy fails to deal with the tensions between the radical and discursive models of participation and in the final analysis draws mainly from the discursive model of participation. Furthermore, whilst New Labour policy promotes dialogue between the public and local authority, it does not empower local authority staff to achieve the goal of citizen-centred policy-making.


Antiquity ◽  
2000 ◽  
Vol 74 (285) ◽  
pp. 693-700 ◽  
Author(s):  
Julia Shaw

Great astonishment has been expressed at the recent vitality of the Hindu religion at Ajudhia [sic], and it was to test the extent of this chiefly that … this statement has been prepared. As the information it contains may be permanently useful, I have considered it well to give it a place here. This information is as correct as it can now be made and that is all that I can say CARNEGY(1870: appendix A)After the destruction of Ayodhya's Babri mosque in 1992 by supporters of the Vishva Hindu Parishad (VHP), the statement above seems laden with premonition of the events to come (Rao 1994). More importantly, Carnegy’s comments highlight that the mosque’s destruction was not simply the result of 20th-century politics. The events surrounding and following the outbreak of violence in 1992 have resulted in more ‘spilt ink’ than Carnegy could ever have imagined. This literature can be divided into two main categories; firstly, the initial documentation submitted to the government by a group of VHP aligned historians, which presented the ‘archaeological proof’ that the Babri mosque had occupied the site of a Hindu temple dating to the 10th and 11th century AD (VHP1990; New Delhi Historical Forum 1992). This was believed to have marked the birthplace of the Hindu god Rama (hence the name Rama Janmabhumi — literally ‘birthplace of Rama’), and been demolished at the orders of the Mughal emperor Babur during the 16th century. As a response, a second group of ‘progressive’ Indian historians began a counter-argument, based on the same ‘archaeological proof’ that no such temple had ever existed (Gopal et al. 1992; Mandal 1993). The second category is a growing body of literature which has filled many pages of international publications (Rao 1994; Navlakha 1994). Especially following the World Archaeology Congress (WAC) in Delhi (1994), and subsequently in Brač, Croatia (1998), this has been preoccupied with finding an acceptable route through the battlefield which arises as a result of the problematic, but recurrent, marriage between archaeology, folklore and politics (Kitchen 1998; Hassan 1995).


Author(s):  
R. V. Rao ◽  
B. K. Patel

Selection of a most appropriate material is a very important task in design process of every product. There is a need for simple, systematic, and logical methods or mathematical tools to guide decision makers in considering a number of selection attributes and their interrelations and in making right decisions. This paper proposes a novel multiple attribute decision making (MADM) method for solving the material selection problem. The method considers the objective weights of importance of the attributes as well as the subjective preferences of the decision maker to decide the integrated weights of importance of the attributes. Furthermore, the method uses fuzzy logic to convert the qualitative attributes into the quantitative attributes. Two examples are presented to illustrate the potential of the proposed method.


2020 ◽  
pp. 242-273
Author(s):  
Wilson McLeod

This chapter focuses on the long and ultimately successful campaigns for Gaelic language legislation and a dedicated Gaelic television service between 1997 and 2005. The opening of the Scottish Parliament in 1999 ushered in a new political era in Scotland, and this brought opportunities for more focused policy-making in relation to Gaelic. The government initially resisted calls for Gaelic language legislation but ultimately relented, so that the Gaelic Language (Scotland) Act 2005, was enacted in 2005. Proposals for a Gaelic television service took several years to come to fruition due to political and financial constraints, but agreement was ultimately reached to develop the digital service BBC ALBA. The first dedicated Gaelic school opened in Glasgow in 1999, and the presence of Gaelic in the linguistic landscape expanded, as bilingual signage was authorised for wider use.


2021 ◽  
pp. 32-64
Author(s):  
Paul Daly

This chapter is concerned with the structure of administrative decision-making institutions. Two general aspects of this important topic are particularly relevant to the law of judicial review of administrative action. First, the no-bias principle ensures that decision-making is impartial, by preventing decision-makers from acting where their personal interests, conduct or history could conceivably raise a concern about their ability to make a dispassionate decision on the merits. Second, the principle that a decision-maker must retain their discretion prevents decision-makers from delegating their powers (subject to an exception in the case of government ministers) and limits the scope for the development of policies about how discretionary powers will be exercised in the future. These principles can be understood as being structured by the values of individual self-realisation, good administration, electoral legitimacy and decisional autonomy.


2018 ◽  
Vol 51 (1-2) ◽  
pp. 13-23
Author(s):  
Emin Qerim Neziraj ◽  
Aferdita Berisha Shaqiri

Before the decision makers set much higher requirements in the decision-making than ever before due to the environment of decision-makers subject to change under the influence of progress and development of new technologies, networking individual or organization inside and the outside environment, and modern means of communication enabling continuous inflow, flow and sharing of data and information. In these modern conditions the process of collecting, analyzing, selecting data and information to make informed decisions in the context of possible restrictions and the available options, and ultimately making decisions as the basis for future business or behavior, is not simplified. The use of new technologies in the decision-making process provided numerous opportunities to facilitate decisions selection. However, the decision maker should still be able to differentiate which knowledge should be used to serve in decision making, and which models, methods, tools, systems, and procedures to be used in certain situations, with the purpose of successful decision selection. In this paper, we will examine the decision making process during the business process of the companies in Kosovo.


2017 ◽  
Vol 84 (1) ◽  
pp. 10-22 ◽  
Author(s):  
Karen Shields Wright

Catholic social teaching (CST), a branch of moral theology, addresses contemporary issues within the political, economic, and cultural structures of society. The threefold cornerstone of CST contains the principles of human dignity, solidarity, and subsidiarity. It is the foundation on which to form our conscience in order to evaluate the framework of society and is the Catholic criteria for prudential judgment and direction in developing current policy-making. With knowledge of these social principles, in combination with our faith, we will be more armed and informed as to articulate the Catholic vision of reality, the truthful nature of the human person and society, to apply and integrate the social teachings in our everyday administrative and clinical encounters, and through the virtue of charity take action within the social, political, and economic spheres in which we have influence. Summary The Church's social encyclicals are a reflection upon the issues of the day using the light of faith and reason. They offer commentary on the ways to evaluate and address particular social problems—also using natural law principles—in the areas of politics, economics, and culture. Quotes were selected from the encyclicals that define and expand upon the primary principles for the purpose of representing them for study, reflection, and use in everyday personal and business encounters and decision making for healthcare professionals.


2020 ◽  
Vol 36 (2) ◽  
pp. 235-247
Author(s):  
Michael Babula ◽  
Max Tookey ◽  
Glenn Muschert ◽  
Mark Neal

Purpose The purpose of this paper is to answer the question, “Can particular types of altruism influence people to make unethical decisions?” The purpose of seeking to answer this question is to better understand those cases in personal, public and commercial life whereby a decision-maker is influenced by what is widely perceived to be a positive thing – altruism – to make unethical choices. Design/methodology/approach An experiment was designed to test the influence of different categories of altruism on decision-making about whether to find another guilty for a regulatory transgression. This involved the establishment and running of a student panel at a UK university, which was given the task of determining the guilt or otherwise of two students accused of plagiarism – one from a poor background; one from a rich background. Through a survey of both the decision-makers and their judgments, and by analyzing the data using t-tests and Mann–Whitney tests, the associations between different categories of altruism and the decisions made could be ascertained. Findings A total of 70.7% of the participants voted “not-guilty” for the poor student, whereas 68.3% voted “guilty” for the wealthy student. This indicated that self-interested, namely, egoistic altruism complemented by social and self-esteem needs gratification was significantly associated with violating foundational ethical principles. Originality/value This is the first study to be done that attempts to evaluate the relationships between different categories of altruism and ethical decision-making. The findings here challenge aggregating all forms of empathy together when exploring the antecedents of unethical behavior.


2019 ◽  
Vol 16 (1) ◽  
pp. 130-141
Author(s):  
Karen E Smith

Abstract Foreign policy analysis (FPA) opens the “black box” of the state and provides explanations of how and why foreign policy decisions are made, which puts individuals and groups (from committees to ministries) at the center of analysis. Yet the sex of the decision-maker and the gendered nature of the decision-making process have generally been left out of the picture. FPA has not addressed questions regarding the influence of women in foreign policy decision-making processes or the effects of gender norms on decision-making; indeed, FPA appears to be almost entirely gender-free. This article argues that “gendering” FPA is long overdue and that incorporating gender into FPA frameworks can provide a richer and more nuanced picture of foreign policy–making.


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