Patient Advocacy and the Policy Making Process

Patient Advocacy and the Policy Making Process

DOI: 10.4018/978-1-7998-2653-8.ch002


Recent developments in the policy-making literature and practice have highlighted the growing role of patient advocacy, that is, the participation of patients in policy making through the presence of their representatives at institutional working tables. This chapter has a twofold aim: (1) to frame the activity of patient organizations' advocacy into the public management and administration theory and (2) to describe how patients' organizations can participate to the public policy making from an operational point of view. The chapter starts by providing background information about patient advocacy. Then it introduces the core literature streams of public management and administration. Finally, a feedback analysis shows possible policy cycles linking patient-aided steps of interactive policy making.
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Patients’ organizations are non-profit entities made up of a group of voluntary people, aggregated to pursue common purposes: to represent patients, to provide them practical information for a better management of their own pathologies, to support patients and their entourage (families and caregivers), to organize public campaigns promoting awareness about the diseases, to collaborate with health facilities and institutions, and to carry out advocacy activities. The latter function, representing the main focus of the present chapter, requires providing a definition of patient advocacy. Indeed, patient organizations are no just spokespersons for patients’ needs but key stakeholders, empowered and informed, active participants in the health policy choices. Sometimes the term ‘advocacy’ is used to indicate the concept of any activity carried on by patients’ organizations. It is not the case of this chapter, which instead uses this word by recalling its Latin etymology (‘to add a voice’) and thus accepts the meaning to promote and defend the patients’ cause by bringing their needs to the policy makers (Aloe & De Stefano, 2017).

Patient advocacy builds on patient empowerment and engagement, two relevant concepts influencing each other. Empowerment is a social process occurring when people, organizations and communities acquire expertise on their own lives, gain mastery of their affairs, change their social and political environment, and improve equity and quality of life (Wallerstein, 2006; Rappaport, 1987).

In the healthcare sector, it translates into people’s conscious participation in the management of healthcare. Empowerment can be seen at an individual or at a community level. Individual empowerment means people’s feeling of a sense of control over their lives (Woodal et al., 2010)., which research positively links to mental and physical health (Wallerstein, 1992; 2003). However, individual empowerment is limited because it does not consider the wider environmental influences on people’s health (Woodal et al., 2010). Thus, it is the case to complement the individual’s notion to the collective one, i.e. the community empowerment, able to overcome individual interests of skill formation, and to create communities that can support social changes by mean of partnerships, participation and collective action (Wallerstein, 2006).

Thus, it becomes necessary to valorize patients’ expertise about their own illnesses and the necessary know-how to coexist with them, at the same time increasing individual and collective patients’ knowledge and skills. The latter can only happen through patients’ engagement, i.e. involving them in decisions regarding planning, management and evaluation of healthcare services, and thereby contributing to the sustainability of the health system (Balduzzi, 2009). Indeed, patient advocacy implies the use of strategic information to change public policies and allocative decisions that have a direct impact on people's lives, as well as to direct collective and individual behaviors to the improvement of individuals and communities’ health (Aloe & De Stefano, 2017).

The present chapter has the following goals:

  • 1.

    to frame the activity of patient organizations’ advocacy into the public management and administration theory;

  • 2.

    to describe how patient organizations can participate in the public policy making from an operational point of view.

According to the above scopes, after this background section, the chapter introduces the core literature streams of public management and administration and proposes a feedback analysis showing possible operational cycles within patient-aided interactive policy steps. Finally, conclusions and future research avenues are provided.

Key Terms in this Chapter

Health Technology Assessment: Evaluation of the relative assessment of a new medicine, or a treatment, or a medical device, in comparison with the others existing, in order to support decision making about fair pricings and reimbursements.

New Public Management: Paradigm of public management and administration based on the application of private-sector’s managerial techniques to public services in order to gain efficiency and effectiveness. The key policies and interventions, implemented on the New Public Management’s wave in the Eighties and Nineties, included: privatizations, outsourcing, deregulation of entire sectors of the economy, public facilities’ downsizing, decentralization of responsibilities, introduction of competitive logic within the public sector.

Policy Options: They are the alternative policies discussed and evaluated during the policy-making process.

Patients’ Advocacy: The participation of patients in policy making through the presence of their representatives at institutional working tables.

Project Management: Practice of initiating, planning, executing, controlling, and closing the work of a team, to achieve specific goals within project’s constraints such as timing, quality requirements and budget. The core of project management is the continuous following, monitoring and governing (i.e. management) of each phase of the project. The discipline originated for the conduction of complex projects, for example for engineering, public works, software development, and so on.

Bureaucracy: A model for public management and administration based on rationality, maintenance and legitimization of the legal power, hierarchal mechanisms, rigid definition of rights and duties, mechanical rules and procedures. In the bureaucracy there is a clear separation between the political and the administrative spheres: politicians set the goals of public institutions, while the bureaucracy gives them execution in a neutral way.

New Public Governance: Form of government characterized by the participation of public and private stakeholders to the design and implementation of public policies. Such approach is non-hierarchical and according to some theorists can produce more effective public solutions because it considers needs, opinions and values of different actors.

Policy Implementation: The effective execution of the policy, involving several stakeholders (both public and private) taking action to pursue policy goals. The success of a certain policy largely depends on an appropriate implementation, in terms of planned resources, skills, organizational features and risks.

Policy: Rules to direct behaviors in specific sectors or areas of intervention, established by a government body, called policymaker, invested of the authority to set such rules. The policymakers can be supranational (e.g., the EU Parliament), national (e.g., national Parliaments and Governments), bureaucratic (e.g., departments), sectoral (e.g., utilities regulators), regional or local (e.g., regional or local councils, regional or local healthcare authorities).

Policy Evaluation: Consists on the assessment of the changes occurred due to the policy, to be measured in short, intermediate and long terms. The evaluation can take place during the policy design (before implementation) to compare the cost-benefit or cost-effectiveness of alternative policy options; during implementation, to monitor short and medium term policy outcomes; and at the end of implementation, to evaluate long term indicators of policy-driven changes (impact evaluation).

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