Abstract
Healthcare management recognizes the importance of a patient-centered model whereas decision-making takes place pursuing social value, and empowered patients collaborate with healthcare operators in order to receive the best possible care. In this regard, patients' organizations are social groups taking care of patients' interests along several dimensions. This chapter introduces the phenomenon of patients' organizations and briefly describes the possible roles they can play within healthcare, both at macro and micro levels. The chapter organization is as follows: the background section introduces the importance of patient empowerment and describe the patient-centered healthcare model in general terms and as far as hospital organizational implications are concerned. It is followed by the definition of patients' organizations and a brief description of their diffusion. The chapter continues with a section about the social roles of patients' organizations, also considering the challenges posed by the digital transformation. It ends with conclusions and future research directions.
TopBackground
In the last decades, the definition of healthcare quality has evolved to take into consideration not just clinical outcomes but also patients’ personal needs (Berghout et al., 2015; Luxford et al., 2011; Sepucha et al., 2004). Such trend can be summarized by the affirmation of the ‘patient-centered’ care (Pelzang, 2010; Mead & Bower, 2000, 2002; Lawrence & Kinn 2012; World Health Organization, 2007), a model of healthcare provision characterized by respect and responsiveness of individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions (Institute of Medicine [IOM], 2001).
The introduction of the term in the medical field is ascribable to Balint (1957), whose research has progressively inspired medical and healthcare management literature, reporting the need for a shift from the traditional, paternalistic and professional/provider-focused approach to an egalitarian and patient-focused one. The results of this process are relevant healthcare improvements, especially on clinical outcomes, patient satisfaction, equity and efficiency (Arora et al., 2009; Ford-Gilboe et al., 2018; Prag et al., 2017; Rathert et al., 2013; Stewart, et al., 2000; Street et al., 2009). For these reasons, policy makers all over the world have included patient-centeredness within their agendas (Selby & Lipstein, 2014; Santana et al., 2017).
At the same time, new tools and indicators have been developed to measure healthcare quality from the patient’s perspective (Epstein & Street, 2011; Sawyer et al., 2014; Sepucha et al., 2004). In addition, the patient-centered care, called partnership approach by Cooper et al., (2016), can be related to the person-centered model (Santana et al., 2017) including also people not directly affected by illnesses but involved in the process of care, e.g. families and caregivers.
The core of the patient centered approach is its multi-dimensionality; according to the Picker Institute (Gerteis et al., 1993), eight dimensions identify patient-centered care:
- 1.
respect for patient preferences, values and expressed needs;
- 2.
information, education and communication;
- 3.
coordination and integration of care and services;
- 4.
emotional support;
- 5.
physical comfort;
- 6.
involvement of family and friends;
- 7.
continuity and transition;
- 8.
access to care and services.
Key Terms in this Chapter
Process-Oriented Organizations: Organizations whose structures and performance measurement systems are based on processes rather than functions. They formally design, document and monitor operational processes and their interrelations, identifying for each process a process owner (i.e., a responsible manager). A process-oriented organization is also characterized by a culture of teamwork and collaboration, change management, and focus on customers (patients in the case of healthcare organizations).
Chronic Conditions or Chronic Diseases: Human health conditions enduring the whole person’s life or for a long-lasting period of time (usually more than three months). They usually affect multiple areas of the body and are not fully responsive to treatment. Examples of chronic diseases are arthritis, asthma, cancer. Chronic conditions are usually distinguished from the acute ones.
Patient Organizations: Not-for profit organizations which are patient-focused, and whereby patients and caregivers represent most of members in governing bodies. Their key characteristics are transparency in the sources of funding, legitimacy, democracy rules in their governing bodies, representativeness at national, international and local level, presence of accountability and consultation procedures.
Inter-Institutional Perspective: Approach of policy analysis and design which takes into consideration the view of several institutional actors about a certain theme or issue. This implies to cross the boundaries of single organizations and to consider cross-cutting issues and processes involving the contribution of several stakeholders to public value creation.
Patient-Centered Model: Model of healthcare provision characterized by respect and responsiveness of individual patients’ preferences and needs, ensuring that patient values guide all clinical decisions. It requires a shift from a traditional approach, which is paternalistic and focused on professionals and providers, to a new egalitarian approach, focused on patients, their families and caregivers.
Digital Health: A multidisciplinary domain consisting on the use of information and communication technologies to enhance healthcare processes. The scope is the development of interconnected health systems able to manage illnesses and health risks, and to promote health and wellbeing through computational technologies and smart devices. It includes several applications and services, such as telemedicine, web-based analysis, email, smartphone applications, text messages, wearable devices, social media. These figures favor communication mechanisms between many healthcare stakeholders (patients, clinicians, researchers and scientists, engineers, social scientist, public health’s decision makers, data managers).