Abstract
Leadership in effecting change and transformation of the healthcare landscape on behalf of patients resides chiefly in patient advocacy organizations. The purpose of this chapter is to focus on leadership among not-for-profit patient advocacy organizations both in the U.S. and Europe by examining case studies of first-time leaders emerging in recent decades. Characteristics of these selected individuals are analyzed in the context of established leadership theories. Because of the necessity of securing funds to fulfill an organization's mission, transparency is of growing importance as an on-going and future challenge. Social entrepreneurism is introduced at the chapter's conclusion for its possible relevance to tomorrow's leaders emerging in patient advocacy organizations. Such thinking opens the door to future research to identify essential elements of success in the examination of first-time leadership in patient advocacy and to determine how it is best nurtured, mentored, and applauded.
TopIntroduction
The purpose of this chapter is to focus on leadership as it emerges in not-for-profit patient advocacy organizations in both the U.S. and Europe by examining case studies of first-time leaders among them in recent decades. This chapter resists the argument, especially in the era of patient-centered care, that patient/client advocacy belongs under the auspices of the professional nurse, or clinicians in general. Instead, it presents a novel perspective, grounded in case studies offered as examples and supported by established leadership theories, that leadership in effecting change and transformation of the health care landscape on behalf of patients today resides chiefly in patient advocacy organizations in the not-for-profit sector headed by a variety of leader types, or categories. The ethical challenges to secure mission-driven funding confronting the leader in not-for-profit are also raised, as full disclosure of sources and appropriate transparency are safeguards against potential loss of credibility and the public trust. Since the chapter concludes with social entrepreneurism as a new pathway for not-for-profit leadership, it also suggests entirely new initiatives and possibilities given the sustainable value as a model that it contributes, whether at the local community or global, societal level. The chapter, therefore, opens the door for a rich array of new graduate research and study.
Objectives for Student Learning
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To articulate the variety of characteristics, by category, of leadership that can emerge in patient advocacy organizations
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To understand through case examples the challenges that a leader confronts and overcomes in pursuing a vision and thus fulfilling the mission of the organization
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To identify the important role of engaging key stakeholders for support, resources and leverage
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To grasp how both transactional mobilizing and transformational organizing as concepts can maximize the engagement of others in collaboration, goal achievement and capacity-building
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To appreciate that contemporary leaders in the not-for-profit sector of patient advocacy do not exert influence over others based upon authority or title but rather because of the inspiration they generate with the passion in their voice, their energy and dedication, the consistency in their message and the respect they command by their behavior and fervor.
Background
In nursing education, academicians long considered the counseling of patients by nurses to be a role and responsibility traditionally taught and thus expected of their graduates, once licensed, to practice in nursing. Educators considered this role essential to empowering patients to advocate for themselves (Holmes, 1991). Noteworthy is the fact that patients did not ask the nurse to counsel and thus empower them; rather, the nurse simply assumed, as taught, this was the role expected of the professional nurse (Mallik, 1997). Consequently, the professional nurse long claimed the chief role of patient/client advocacy on the basis that it is the patient’s vulnerability when ill to have an advocate to speak for them (Curtin, 1979; Pellergino, 1981).
Others argue this role is justified simply because nurses know how to advocate since they understand how to navigate the health care system in which they work (Albarran, 1992; Fay, 1978; Graham, 1992; Jezewski, 1993; Jones, 1982; Kosik, 1972). Still others are of the opinion that nurses are in the best position to serve as patient advocates because of the sheer amount of time they spend with patients (Albarran, 1992; Gadow, 1989; Kosik, 1972). The literature alludes to opinions by still others that patients and nurses are natural allies because of their relative weak power compared to the dominance of physicians, at least historically (Winslow, 1984).
Key Terms in this Chapter
Child Advocacy: A range of activities undertaken by individuals, professionals and organizations speaking out in the best interests of children to shield children from abuse and mistreatment and enhance their opportunities for well-being, growth, and development.
Meta-Analyses: The compilation, analysis, and interpretation of data from multiple, independent studies of the same subject, typically published over a period of time, to determine overarching trends and directions.
Market Justice: The principle that it is the responsibility of an individual, rather than the government, to serve one’s self-interests through personal effort and freedom of choice. In the U.S., market justice has been used to argue against government-imposed mandates on individuals, thereby limiting access to health care by those requiring government support to acquire coverage of health care services.
Community Organizer: An aspirational individual who assembles groups that are democratic in governance, open and inclusive, and serves as an activist leader to address disparities witnessed by a specific interest group relative to their general health and social or economic well-being in comparison to a population as a whole.
Anthro-Cultural Belief: A culturally grounded system of viewing and organizing the physical and social world shared by a group of individuals and thus shaping their common ideas and behaviors.
Consumerism: Historically, an economic concept promoting the notion that increasing consumption of goods and services is a desirable goal as a stimulus to growth of an economy. Over the years, it came to be associated with supporting materialism on the idea that a person's well-being and happiness depend fundamentally on the aggregation of acquired consumer goods and services. In most recent years, however, the idea of protecting the consumer’s interests has led to use of the term in the positive context of serving the consumer, with a philosophy of delighting the consumer as customer above the interests of a supplier, vendor, or other provider.
Social Justice: The principle that it is the responsibility of government through taxation or other means to provide equally for the well-being of a nation as a whole, in terms of economic, political and social rights and opportunities. In the U.S., social justice has been used to argue against individual freedom of choice, in order to expand equal access to health care regardless of one’s ability to pay or one’s risk of illness and morbidity.
Patient Centering: The empowerment of patients through the strengthening of relationships between patients and their providers with the goal to improve patient outcomes and quality of care. This contemporary model of communication may include outreach and community building, interactive, web-based learning, and baseline health assessments with a long-term perspective for providing health and wellness.