Patients, Consumers and Civil Society: Volume 10

Health care systems all over the world are undergoing rapid and profound transformations. These changes are the result of a broad array of economic and social trends including neo-liberal economic policies that are contributing to the trend toward privatization, the commodification of health services and products, institutional restructuring (e.g., managed care) to contain costs in the context of technological advances, globalization and demographic changes such as population aging in post-industrial societies. Questions about the accessibility and quality of health care delivery in the face of persistent health disparities, growing numbers of medical errors, and new and uncertain risks posed by emerging infectious diseases, some of them drug-resistant, have also contributed to rethinking about health policy.

Purpose – This chapter examines medical consumerism and the changing relations between patients as consumers and the medical system across two women's health contexts, breast cancer and infertility.

Methodology/approach – The analysis draws on two qualitative studies: The first explores the experiences of 60 breast cancer survivors through in-depth interviews and participant observation (Sulik, 2005), and the second uses in-depth interviews to analyze 18 women's experiences with infertility (Eich-Krohm, 2000).

Findings – The medical consumer is an individualized role that shifts attention away from the quality problem in health care and toward the quality of the person as a medical consumer who is characterized to be optimistic, proactive, rational, responsible, and informed.

Research limitations/implications – As medicine has become a form of mass consumption, the category of medical consumer has elevated the individual in medical decision-making. The shift from patient to medical consumer is an ongoing process that is grounded in a tension between medical control and individual agency, and is exacerbated by the intensity and incomprehensibility of modern medicine.

Practical implications – The proliferation of medical information and personal illness narratives through the Internet, advice books, and self-help groups have advanced lay knowledge about preventive medicine and medical treatment while simultaneously introducing new fears and anxiety about the multitude of options and outcomes.

Originality/value of chapter – This study contributes to our knowledge on medical consumerism and its impact on illness experience and the synthesis of lay and professional knowledge.

Purpose – This chapter explores the pharmaceutical industry's strategic utilization of empowerment discourse in two realms: direct-to-consumer advertising (DTCA) and clinical drug development.

Methodology – It draws upon two research projects that examine the role of the pharmaceutical industry in the political economy of healthcare in the United States: Ronald's policy analysis and participant observation of DTCA policy hearings and Fisher's participant observation and interviewing of the clinical trials industry.

Findings – Empowerment rhetoric is mobilized by the pharmaceutical industry to create specific expectations about patient-consumer behavior, particularly the responsibilities associated with the consumption of drugs.

Research implications – The social and economic implications of DTCA and drug trials must be understood within their broader historical and contemporary contexts of health advocacy, consumerism, and medical neoliberalism.

Practical implications – The chapter offers alternative constructions of healthcare subjects and pharmaceutical practices that can mitigate the power of the pharmaceutical industry and bring about better pharmaceutical governance.

Originality/value of chapter – By analyzing findings from two empirical projects, this chapter is able to shed light on trends in the pharmaceutical industry's discourse about empowerment and consumption from the clinical testing to marketing of new drugs.

Purpose – This chapter addresses the transformation of patient into consumer, focusing on the specific population of human egg recipients. This work also analyzes medicine, and reproductive medicine and egg donation specifically, as marketplaces, particularly as they function in the Internet environment.

Methodology – This chapter utilizes a content analysis of egg donation related websites using both inductive and deductive coding schemes.

Findings – Egg donation related websites and their practices do indeed fit the model of a reproductive medicine marketplace, particularly those practices related to marketing strategies and cost.

Originality/value – This work focuses on the Internet as a primary location for a reproductive medicine marketplace, and develops a new understanding of the ways in which consumers are transformed by and operate in this market. It also demonstrates the emerging need for policy to govern this marketplace.

Purpose – This chapter briefly outlines the history of childbirth in the United States and describes the influence of the natural birth movement and consumer demand in shaping the contemporary advertising of mainstream maternity services.

Design/methodology/approach – Qualitative content analysis of 59 hospital websites was undertaken in order to understand how hospitals depict childbirth in their online advertising.

Findings – Our findings illustrate how contemporary medical institutions idealize childbirth through their depictions of its physical and social dimensions. Although hospital advertising has adopted some of the rhetoric of the natural birth movement in describing the social and symbolic dimensions of the childbirth experience, this rhetoric is shown to stand in tension to the highly rationalized and bureaucratic institutional nature of hospitals. These tensions are most apparent in advertised descriptions of the physical environment of maternity centers and in the attempt to depict hospitalized birth as an opportunity for the individual empowerment of women.

Research limitations/implications – This research is limited to an analysis of how providers advertise their services and does not provide data on whether practices actually reflect the rhetoric of the ideal birth. Future research should consider the fit between rhetoric and reality in hospital maternity practices in order to better understand the social structural constraints of delivering these services in a hospital maternity center.

Originality/value – This chapter highlights the importance of consumer demand for how maternity services are portrayed and identifies key tensions between an idealized image of birth and the rational, bureaucratic demands of modern medical institutions.

Purpose – This chapter critically examines the purportedly growing phenomenon of Maternal Request Caesarean Sections (MRCS) and its relative contribution to the rising caesarean section (CS) rates.

Methodology – We apply a decentred comparative methodological approach to this problem by drawing upon and comparatively examining empirical data from Canada, the US, the UK and Finland.

Findings – We find that the general argument that has emerged within the obstetric community, evidenced in particular by a recent “State of the Science” conference, is that the reduced risks and benefits of MRCS are evenly balanced, thus ethically it could be seen as a valid choice for women. This approach, taken in particular in the North American context, negates the problematic nature of accurately measuring, and therefore assessing the importance of maternal request in addressing rising CS rates. Moreover, although some of the blame for rising CS rates has focused on MRCS, we argue that it has a relatively minor influence on rising rates. We show instead how rising CS rates can more appropriately be attributed to obstetrical policies and practices.

Originality – In presenting this argument, we challenge some of the prevailing notions of consumerism in maternity care and its influence on the practice patterns of maternity care professionals.

Practical implications – Our argument also calls into question how successful efforts to address MRCS will be in reducing CS rates given its relatively minor influence.

Purpose – This research considers how self-help groups (SHGs) and self-help organizations (SHOs) contribute to consumerist trends in two different societies: United States and United Kingdom. How do the health care systems and the voluntary sectors affect the kinds of social changes that SHGs/SHOs make?

Methodology/approach – A review of research on the role of SHGs/SHOs in contributing to national health social movements in the UK and US was made. Case studies of the UK and the US compare the characteristics of their health care systems and their voluntary sector. Research reviews of two community level self-help groups in each country describe the kinds of social changes they made.

Findings – The research review verified that SHGs/SHOs contribute to national level health social movements for patient consumerism. The case studies showed that community level SHGs/SHOs successfully made the same social changes but on a smaller scale as the national movements, and the health care system affects the kinds of community changes made.

Research limitations – A limited number of SHGs/SHOs within only two societies were studied. Additional SHGs/SHOs within a variety of societies need to be studied.

Originality/value of chapter – Community SHGs/SHOs are often trivialized by social scientists as just inward-oriented support groups, but this chapter shows that local groups contribute to patient consumerism and social changes but in ways that depend on the kind of health care system and societal context.

Purpose – The goal of this chapter is to understand the role of nonprofit voluntary health organizations (VHOs) in the lives of Canadian women coping with breast cancer.

Methodology – Through qualitative interviews with breast cancer survivors and records of VHOs active in this field, we assess the level and nature of their interactions and impact on women's quality of life.

Findings – Our findings suggest that at the micro-level, VHOs are venues for women to receive auxiliary services such as information, counseling, and support that complement the mainstream health care provision. While VHO services empower women as health care consumers, we show that they also serve as venues for women to reciprocate by volunteering. This process of reciprocity helps women cope with their own healing and allows them to be not only consumers but also producers of health services.

Research limitations – The non-random nature and the small sample size make our findings not easily generalizable to the larger population of breast cancer survivors; rather they are indicative of the experiences of Canadian women in one large urban metropolitan area.

Value of the chapter – We demonstrate the role of VHOs as venues of health consumerism as well as places for consumers to become involved in the production of services by volunteering.

Purpose – This chapter examines the international Clubhouse movement, which features a unique “partnership model” that enables individuals who have serious and persistent mental illness to take an active role in their recovery. Consumer–provider and consumer–consumer supportive relationships are deepened through engagement in a range of cooperative activities both in the Clubhouse and in the local community.

Methodology – Data for this study have been gathered via case materials, semi-structured interviews, review of official publications, direct experience, participant observation, primary and secondary sources.

Findings – This study is consistent with other research demonstrating the efficacy of the Clubhouse model in providing mental health consumer assistance and support to gain paid employment, an education, and adequate housing.

Research limitations – While data have been gathered from a variety of sources encompassing a large number of Clubhouses, this is a single case study that includes limited comparative analysis with other modalities.

Practical implications – The Clubhouse model is an option that shows great promise for assisting mental health consumers to obtain employment, education, housing, and supportive relationships including peer support. It also promotes leadership development and participation in collective action for policy reform.

Originality/value – The Clubhouse approach is grounded in an empowerment paradigm of helping that emphasizes a strengths-based perspective, resiliency, activated consumers, collaborative partnerships with professionals, high expectations, self-help, mutual assistance, self-advocacy, and collective action for social change.

Purpose – This study seeks to answer the question of whether donations to the Dutch Heart Association are a form of solidarity of the healthy with the sick. In doing so, I test hypotheses on the origins of charitable donations in awareness of need in conjunction with dispositional empathic concern, social networks and own health.

Methodology – I report probit, tobit and multinomial regression analyses on data from the Giving in the Netherlands Panel Survey (2002–2004; n=1,246) on donations to the Dutch Heart Association and other health charities.

Findings – I find that experience with cardiovascular diseases is associated with a higher likelihood of donating to the Dutch Heart Association, especially among those with higher levels of empathic concern and social responsibility, and among those who are not in excellent health themselves. Support for the Dutch Heart Association comes from those who are aware of the need for contributions and more easily imagine themselves in a situation similar to those of heart patients.

Research limitations/implications – The results confirm the role of empathic concern, explore the role of own health and seem to reject the role of ties to family members. The study is limited to the Dutch Heart Association. Future research should test whether these results can be generalized to donations to other charitable causes.

Originality/value of chapter – This study contributes to our knowledge on charitable donations, revealing new insights on the influence of awareness of need.

Purpose – Recent research on the modes of patient activism has displaced older notions of patients as passive, compliant subjects of biomedical power. This chapter expands analyses of patient activism to examine the intersections between the processes of identity formation, the emergence of a new scientific field (human stem cell research), and political institutions.

Methodology – This chapter uses in-depth interviews, ethnographic techniques, and textual analyses to collect data regarding California's 2004 ballot initiative, Proposition 71, The California Stem Cell Research and Cures Act. Data were analyzed using a situational analysis approach. Situational analysis is a variant of grounded theory that organizes data in the form of maps of connections between actors and social worlds.

Findings – This chapter examines the content and significance of this event through the construction of a collective identity among supporters of Proposition 71, what I call “stem cell activists.” The construction of this collective identity serves as an important ground from which individuals and groups carve out political claims of self-representation. Stem cell activists also helped pass a controversial initiative through the efforts in publicly supporting Prop 71 and human stem cell research.

Research limitations – This research is limited in that it only examined individuals who became stem cell activists, and not individuals from whom this identity failed to gain salience. More research is needed to understand the conditions under which this identity becomes incorporated within a person's political repertoire.

Value of chapter – This chapter brings together theoretical perspectives on the symbolic aspects of identity construction and the political economy of biomedical science. This chapter will be of interest to scholars in medical sociology, science and technology studies, and social movement researchers.

Purpose – This chapter assesses the role of self-help groups within the emerging civil society in two transitional economies, Croatia and Slovenia, focusing on the impact of relationships with health or social care professionals and the state.

Methodology – Methods include participant observation, interviews, and document analysis of 31 groups studied intermittently from 2001 to 2007.

Findings – Self-help groups range from those three decades old to those dealing with “new social problems.” Groups, and the third sector generally, remain essentially dependent on the state. Few exist separately from formal service organizations. Those closely linked with medical institutions are challenged by state retrenchment and privatization. Others contend with funding instability, and Western models of non-profit development are expanding. Relationships with professionals are neither subservient nor independent; instead, groups act as corollaries and educators to the professional realm.

Implications, limitations, and value – Findings suggest more nuances in self-help groups' relations with the state and professionals than found in Western settings. This may illustrate both the potential and the limits of citizen involvement in new non-governmental sectors. It also demonstrates how relations between professionals and self-help groups depend on social and material relations well beyond the domain of systems of care. While specific findings cannot be generalized beyond the research settings, the study shows the importance of understanding such groups within social and political contexts. Contributions to civil society here included re-making public meanings, identities, and relations with professionalized systems. Further comparative assessment of self-help associations is essential to theory on the third sector in civil society.

Purpose – This study identifies the multiple contributions of the Salvadoran women's movement in sustaining mass mobilization under the threat of public health care privatization.

Methodology/approach – A case study methodological approach shows how the emergence of an autonomous women's movement in El Salvador in the late 1980s and early 1990s “spilled over” (Meyer & Whittier, 1994) to assist in the maintenance of the health care campaigns in the late 1990s and early 2000s.

Findings – We observed three arenas in which the women's movement played pivotal roles in the anti-health care privatization struggle: (1) women-based organizations; (2) leadership positions within larger coalitions brokering the participation of diverse social sectors; and (3) key advocacy roles inside the state. These three contributions of the women's movement increased the overall level of mobilization and success against health care privatization.

Research limitations – The study centered on one major group of health care consumers. The role of other civic organizations should be examined in future research.

Originality/value of chapter – The study demonstrates that in the era of globalization, women's movements form a critical part of the social movement sector facilitating the construction of large coalitions protecting consumers from neoliberal restructuring in areas such as public health care.