Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical (...) evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered. (shrink)

Patient organizations increasingly play an important role in health care decision-making in Western countries. The Netherlands is one of the countries where this trend has gone furthest. In the literature some problems are identified, such as instrumental use of patient organizations by care providers, health insurers and the pharmaceutical industry. To strengthen the position of patient organizations government funding is often recommended as a solution. In this paper we analyze the ties between Dutch government and Dutch patient organizations to learn (...) more about the effects of such a relationship between government and this part of civil society. Our study is based on official government documents and existing empirical research on patient organizations. We found that government influence on patient organizations has become quite substantial with government influencing the organizational structure of patient organizations, the activities these organizations perform and even their ideology. Financing patient organizations offers the government an important means to hold them accountable. Although the ties between patient organizations and the government enable the former to play a role that can be valued as positive by both parties, we argue that they raise problems as well which warrant a discussion on how much government influence on civil society is acceptable. (shrink)

Patient organizations increasingly play an important role in health care decision-making in Western countries. The Netherlands is one of the countries where this trend has gone furthest. In the literature some problems are identified, such as instrumental use of patient organizations by care providers, health insurers and the pharmaceutical industry. To strengthen the position of patient organizations government funding is often recommended as a solution. In this paper we analyze the ties between Dutch government and Dutch patient organizations to learn (...) more about the effects of such a relationship between government and this part of civil society. Our study is based on official government documents and existing empirical research on patient organizations. We found that government influence on patient organizations has become quite substantial with government influencing the organizational structure of patient organizations, the activities these organizations perform and even their ideology. Financing patient organizations offers the government an important means to hold them accountable. Although the ties between patient organizations and the government enable the former to play a role that can be valued as positive by both parties, we argue that they raise problems as well which warrant a discussion on how much government influence on civil society is acceptable. (shrink)

Part of the debate on cost containment in healthcare systems may be characterized as applied political philosophy One might say that the current debate between competing theories of justice that started with Rawls' A Theory of Justice in 1971 has acquired a small sister debate in healthcare philosophy Major participants in the debate on social justice have become an important source of inspiration for bioethicists interested in a just distribution of healthcare resources. Thus Rawls' A Theory of Justice has been (...) remodeled for healthcare philosophy by Norman Daniels. Nozick's libertarian manifesto Anarchy, State, and Utopia has been used for bioethical purposes by H.T. Engelhardt. The books of Daniel Callahan evidently belong to a family of communitarian theories, though Callahan cannot be said to follow one or another communitarian thinker in particular. In the next two sections of this article I will give a very brief sketch of the debate on social justice in political philosophy and then discuss the sister debate on social justice in healthcare. (shrink)

Part of the debate on cost containment in healthcare systems may be characterized as applied political philosophy One might say that the current debate between competing theories of justice that started with Rawls'A Theory of Justicein 1971 has acquired a small sister debate in healthcare philosophy Major participants in the debate on social justice have become an important source of inspiration for bioethicists interested in a just distribution of healthcare resources. Thus Rawls'A Theory of Justicehas been remodeled for healthcare philosophy (...) by Norman Daniels. Nozick's libertarian manifestoAnarchy, State, and Utopiahas been used for bioethical purposes by H.T. Engelhardt. The books of Daniel Callahan evidently belong to a family of communitarian theories, though Callahan cannot be said to follow one or another communitarian thinker (be it Christopher Lasch, Alisdair Maclntyre, or Amitai Etzioni) in particular. In the next two sections of this article I will give a very brief sketch of the debate on social justice in political philosophy and then discuss the sister debate on social justice in healthcare. (shrink)