ABSTRACT
Health care is increasingly approached as a market with experts and technologies that serve consumers (instead of patients). Medical and health care decisions are not only driven by the motives and values of the participants, but often by political and economic powers such as health authorities, insurance companies and the pharmaceutical industry. At the same time, the involvement of patients and clients in their care process is considered of value in today’s Western societies because of democratic and normative arguments. The patient and disability movement seeks attention for democratic rights for patients to have a say about the care they receive and be master of their own lives (Oliver, 1990, 1992). Also, clients can bring in specific experiential knowledge that can be additional to the expert knowledge of professionals and management (Caron-Flinterman et al., 2005). This experiential knowledge can contribute to improvements in quality of care (De Wit, 2013; Schipper, 2011). These two developments lead to a situation where on the one hand health care is more and more approached as a market and on the other where attention has to be paid to democratic rights and the experiential knowledge of patients. In this modernisation process the connection between the health care system and the lifeworld and experiences of patients has become problematic. Seen through the lens of Habermas’ theory this can be interpreted as an increase in strategic action and system supremacy via lifeworld colonisation (Habermas, 1987). In response to this alienation, recently more attention has been paid to the experiential knowledge of clients and their participation in decisions, either on an individual or collective level (Abma and Baur, 2014a, 2014b; Baur, 2012). Experiential knowledge provides insights into the way patients experience the impact of a chronic illness or disability on everyday life, what their struggles are and how they cope with and endure the influence of the health care system (De Wit, 2013; Schipper, 2011; Teunissen, 2013). Restoring the relationship between experiential knowledge and other kinds of medical or expert knowledge is pivotal for patients to regain trust and autonomy within the health care system (Tronto, 2008). The question is how the health care system can open up their
practice and how they can listen to patients, changing practices and accepting new roles for patients as responsible and collaborative partners. One of the ways to enable participation of clients in policy-making processes in health care organisations is involvement in resident councils. Since 1996, in the Netherlands this participation has been supported by law (Wet Medezeggenschap Cliënten Zorgsector) (Van der Voet, 2005). This legal arrangement is based on the idea that the client council is a meeting place for the daily experiences of clients and the management plans and decisions in the organisation. By following this legal framework, the experiential knowledge of clients and the plans in the policy-making process would be mixed, leading to the attunement of care to clients’ wishes and needs and to opportunities to have their voice heard. Unfortunately, everyday practice is more stubborn (Baur, 2012; Petriwskyj et al., 2015; Abbot et al., 2000; Belderok, 2002; Van der Meide et al., 2015; Woelders and Abma, 2015). To understand this process again Habermas’ theory can be helpful to interpret what happens in resident councils in practice. Baur and Abma (2011) conclude that in a resident council the system world of the organisation and the lifeworld of clients come together. But at the same time, the gap between lifeworld and system cannot be bridged easily, leading to feelings of frustration and disempowerment for both clients and management. Subsequently, the question arises whether communicative action described by Habermas (1987) could be helpful to bridge this gap. In this chapter we will focus on the collective involvement of clients in the policy-making process of a health care organisation. The purpose of this chapter is to use the theory of Habermas to interpret what happens in these practices under study and to use his concepts to try to overcome some barriers in the process of giving voice to clients. Finally we will conclude by discussing the implications of our mixing of empirical research material and the theoretical notions of Habermas.
