Hester van de Bovenkamp

Reconsidering Patient Participation in Guideline Development

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.

Choice policies in Northern European health systems

This paper compares the introduction of policies to promote or strengthen patient choice in four Northern European countries - Denmark, England, the Netherlands and Sweden. The paper examines whether there has been convergence in choice policies across Northern Europe. Following Christopher Pollitts suggestion, the paper distinguishes between rhetorical (discursive) convergence, decision (design) convergence and implementation (operational) convergence (Pollitt, 2002). This leads to the following research question for the article: Is the introduction of policies to strengthen choice in the four countries characterised by discursive, decision and operational convergence? The paper concludes that there seems to be convergence among these four countries in the overall policy rhetoric about the objectives associated with patient choice, embracing both concepts of empowerment (the intrinsic value) and market competition (the instrumental value). It appears that the institutional context and policy concerns such as waiting times have been important in affecting the timing of the introduction of choice policies and implementation, but less so in the design of choice policies. An analysis of the impact of choice policies is beyond the scope of this paper, but it is concluded that further research should investigate how the institutional context and timing of implementation affect differences in how the choice policy works out in practice.

An empirical study of patient participation in guideline development : exploring the potential for articulating patient knowledge in evidence-based epistemic settings

Patient participation on both the individual and the collective level attracts broad attention from policy makers and researchers. Participation is expected to make decision making more democratic and increase the quality of decisions, but empirical evidence for this remains wanting.

Including citizens in institutional reviews: expectations and experiences from the Dutch Healthcare Inspectorate

Recent changes in the structure and policy context of Dutch health care have placed the issue of citizen participation high on the agenda of the Dutch Healthcare Inspectorate (IGZ), which conducts quality and safety reviews in medical practices and health‐care institutions. With a few exceptions, the potential role that citizens can play in the regulation of health‐care institutions is overlooked in research on patient/citizen participation in health care.

Government Influence on Patient Organizations

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.

Co-production in healthcare: rhetoric and practice

Co-production in healthcare is receiving increasing attention; however, insight into the process of co-production is scarce. This article explores why hospitals involve patients and staff in co-production activities and hospitals’ experiences with co-production in practice. A qualitative study with semi-structured interviews (N = 27), observations (70 hours) and document analysis was conducted in five Dutch hospitals, which involved patients and staff in order to improve services. The results show that hospitals have different motives to involve patients and staff and have adapted existing methods to involve patients. Interestingly, areas of improvement proposed by patients were often already known. However, the process of co-production did contribute to quality improvement in other ways. The process of co-production stimulated hospitals’ thinking about how to realize quality improvements. Quality improvements were facilitated by this process as seeing patients and hearing their experiences created a sense of urgency among staff to act on the improvement issues raised. Moreover, the experiences served to legitimatize improvements to higher management bodies. Points for practitioners Different participation methods can bring patients’ experiences with healthcare services to the fore, which can be used for quality improvement. Our study shows that adapting existing methods to local hospital resources is likely to be beneficial for co-production processes within a given context. However, adapting and tailoring also poses risks. Tailoring activities, such as using criteria to select patients, influence what is considered to be legitimate patient input. In addition, as the co-production process is important, the method should consist of an organized trajectory in which patients and staff are involved and personal experiences are presented. Therefore, project teams need to critically reflect on the consequences of adaptations and tailoring actions, and their desirability, when carrying out quality improvement projects.

Voice and choice by delegation

In many Western countries, options for citizens to influence public services are increased to improve the quality of services and democratize decision making. Possibilities to influence are often cast into Albert Hirschmans taxonomy of exit (choice), voice, and loyalty. In this article we identify delegation as an important addition to this framework. Delegation gives individuals the chance to practice exit/choice or voice without all the hard work that is usually involved in these options. Empirical research shows that not many people use their individual options of exit and voice, which could lead to inequality between users and nonusers. We identify delegation as a possible solution to this problem, using Dutch health care as a case study to explore this option. Notwithstanding various advantages, we show that voice and choice by delegation also entail problems of inequality and representativeness.

The relationship between mental health workers and family members

OBJECTIVE To study the relationship between family members and mental health care workers to learn more about the support available to family members of mental health patients. METHODS Eighteen interviews were conducted with family members, seven with professionals and two with patients. Observations were performed at a long-term hospital ward and at family and client council meetings. RESULTS Family members perform an important carer role which greatly affects their lives. They need support from mental health professionals in order to cope. However, communication between mental health care workers and family members is problematic. Family members report a lack of information, consultation and support. CONCLUSION Family members and mental health care workers frame the role of family members in the care process differently. PRACTICE IMPLICATIONS Since the role of family members in the care process can be beneficial for all actors including the mental health patient it is important that mental health professionals acknowledge this and provide support to family members. Considering relatives as fellow carers (reframing their role) could be the way to do this.

The making of a European healthcare union: a federalist perspective

ABSTRACT European Union (EU) involvement in healthcare policies is growing, despite the fact that national governments prefer to keep an almost exclusive say in these policies. This article explains how this shift of authority could happen and explores whether it will lead to a European healthcare union. It argues that federalism offers the most fruitful way to do so because of its sensitivity to the EUs institutional settings and to the territorial dimension of politics. The division of competences and national diversity of healthcare systems have been major obstacles for the formation of a healthcare union. However, the EU obtained a role in healthcare through the impact of non-healthcare legislation, voluntary co-operation, court rulings, governments’ joint-decision traps and fiscal stress of member states. The emerging European healthcare union is a system of co-operative federalism without much cost-sharing. The healthcare unions robustness is limited, also because it does not generate much loyalty towards the EU.

The emerging EU quality of care policy: from sharing information to enforcement.

Despite the fact that Member States and many citizens of the EU like to keep healthcare a foremost national competence and the EU treaties state that Member States remain primarily responsible for the organization and delivery of health care services, the European Union (EU) has expanded its involvement in healthcare policy over the last twenty years. Based on interviews and document and literature analysis we show that the scope of EU involvement has widened from public health and access to care, to quality of care. In this paper we concentrate on the latter. Focusing on the recent EU initiatives regarding the quality systems of the Member States and the quality of services, this paper shows how the depth of EU interference has increased from sharing information to standardization and even to the first signs of enforcement. We argue that at this stage, reflection on the feasibility and desirability of the EUs involvement is clearly needed, also considering the differences in quality of care policies between and within EU Member States. Both arguments in favour and against further EU involvement are discussed in this paper.