This chapter presents a reflective analysis based on the literature and on the author's experience regarding the challenges for health professionals and for patients within the scope of the patient advocacy activity, especially in Portugal, where the formal figure of the patient advocate is almost non-existent. Patient Associations, professionals, patients and their families, and citizens in general are unaware of this concept, making it a priority to invest in health literacy and to structure training programs in patient advocacy. The authors believe that there is still a long way to go in Portugal in this matter and that the model, Assertiveness, Clarity of Language, and Positivity (ACP), is an essential model for the entire patient advocacy development process and implementation of the patient advocate figure in the area healthcare. In this chapter, some experiences, projects and the first results of an exploratory study will be presented in order to help in improving the understanding and knowledge of these concepts in Portugal.
TopThe Path To Patient Advocacy In Healthcare
Experiencing a situation of illness and the various challenges that a person faces at different levels certainly involves learning and changing behaviours and attitudes.
In a situation of illness a person may often experience moments of loneliness, suffering, fear, trepidation and anguish, which are moments of crisis for patients and families and which each person lives in a different way.
An illness process leads to significant changes in the person's daily life, which can be very stressful, and family and friends will naturally be the person's emotional and social support.
In this context, it is important to promote patient-centred health care, where compassion, empathy, caring and good communication between the health professional and the patient and his/her family should be a constant and present premise in the daily life of health organisations. Leebov (2020), reflecting on and addressing the importance of caring language in several contexts, states that, in addition to all the benefits and consequences, the reason for compassion is the elevation of the person, and compassionate acts are powerful and healing.
From the perspective of health communication, as Vaz de Almeida & Belim (2020) point out, three communication skills - assertiveness, clarity, and positivity - are essential and vital in the dynamics of health care so that health professionals improve their relationship with the patient and optimise their health and well-being.
The experience of the patient and their family throughout the care process is equally important and should be used for continuous improvement of the quality and safety of care.
Reinforcing these reflections, it is also important to highlight Patient Safety in healthcare, which in recent years has been the focus of attention of many researchers. The World Health Organization (WHO), aware of the evidence and the extent of the problem, has developed efforts and initiatives, launching various challenges worldwide in the area of patient safety and has gradually encouraged health professionals, patients and citizens in general to develop various actions to promote safer practices. In this sense, in 2013, the WHO promoted the Patient for Patient Safety action, highlighting the central role of patients in improving the quality and safety of care (WHO, 2013a). This program brings together patients, health professionals, policymakers, and victims of incidents, promoting partnerships between the various actors and several initiatives, particularly the development of the Patient Advocacy (PA) activity and communication tools, in order to empower the patient and promote the Patient Advocate (PAe) (WHO, 2013a). In 2020, the WHO Action Plan for Patient Safety 2021-2030, in a set of seven strategic objectives, dedicates the 4th objective exclusively to strategies for the involvement and empowerment of patients and families to promote safer care (WHO, 2021), also reinforcing the importance of patient representatives and advocates.
From this perspective, we consider it important to reflect on three main concepts: “Patient-Centred Care”, “Patient Advocacy” and “Patient Safety”. These three concepts are still evolving, have a relevant importance in the context of health care and together they enhance the improvement of health care, greater satisfaction of patients and professionals, contributing to more humanised care.
Each person is unique and therefore patient-centred care depends on the needs, circumstances and preferences of the person receiving healthcare, (PROQUALIS, 2016) and PA is essentially based on the promotion and advocacy of patient rights and the patient-centred care model (Gonzalez, 2018). “Patient Safety” implies “reducing the risk of unnecessary healthcare-related harm to an acceptable minimum” (Portugal, 2011). Thus, based on these three concepts, we believe that health organizations that adopt practices and strategies within the scope of “Patient-Centred Care” and “Patient Advocacy” will certainly be promoting safer care and “Patient Safety”.