For several decades, healthcare practices have a shared and recurring idea that, be effective, they must acknowledge the role of their receiver. Particularly, Patient Centered Medicine (PCM), by deeply challenging the past dominant bio-medical paradigm, refocused healthcare organizations and procedures from the sole centrality of these professionals, to a better consideration of “patients’ voices” in the process. The shift is in favour of PCM sensibility in healthcare, re-oriented care criteria, and objectives toward a better consideration of the whole “illness burden” and not only of the patient’s disease. In other words, PCM advocates for a more holistic understanding of care recipients, not only as carriers of organic dis-functionalities, but as persons deeply involved in a sociocultural context with complex backgrounds of life histories, experiences, and expectations of health and care.
This epochal turning point settled the ground for renovation of healthcare systems by casting light on the complex system of subjectivities that are involved in each process of care planning and delivering. However, changes and evolutions in healthcare sensibility and management, preached by the PCM, has not always been translated into real practice.
The concept of patient engagement is “son” of the renewed sensibility that PMC promoted about the role of patients in the care process.
In theory, the idea of engagement expresses the goal of a maximum acknowledge of the patients’ role in the care process. However, in the practice, this is far to be realized. Curious to be noticed, the words we use to advocate for engagement are still anchored to a “passivizing” approach of medical care. We still speak of “PATIENTS”, and we argue that “THEY HAVE TO BE ENGAGED” in the care process. These linguistic expressions are a sort of paradox (and very often our language and the terms we choose to indicate concept and practices tell us a lot of our implicit conventions and assumptions!).
The word patient originally meant ‘one who suffers’. This English noun comes from the Latin word patiens, the present participle of the deponent verb, patior, meaning ‘I am suffering,’ and akin to the Greek verb πάσχειν (= paskhein, to suffer) and its cognate noun πάθος (= pathos).
As a matter of fact, today the most recurrent conceptualizations and use of the patient engagement concept implicitly evoke an asymmetric relationship between an “expert” (i.e. the healthcare professionals) and a “lay” person who have to be changed in some extent, namely made more responsive, more adherent to prescriptions, more activated in the care management , etc. Conceptualizations, thus, that appear a reparatory answer to the still “passivizing” approach of medical care, in a health systems that haven’t succeeded yet in the concretization of a really patient centered approach to medicine.
A part from the rhetoric claims that we share in the literature, in the practice often the patient is still considered “a disease carrier” , and the focus is still on the illness treatment, rather than on the person in its whole. The claim for a broader and more “positive” conceptualization of patient engagement would lead to a more genuine consideration of “patients” as “persons”, who are carrier of histories, desires, needs, preferences and projects for their present and the future life: projects that – at least at the emotive levels – shouldn’t made impossible by the disease, but – at the maximum – reconfigured and reoriented, in the eudaimonic development of a new self-representation.
Persons that are more complex than “patients”. Persons that incarnate different social roles, different desires, different aspirations in their public and private life. Roles that have to be acknowledged and sustained even after the occurrence of a diagnosis, even after that an individual is labelled “patient”, in a very passivizing medical language. To pass a sense of control on one own disease and cure process – not only at the behavioral level, but foremost at the cognitive and emotional level – appear crucial for guaranteeing a true engagement of people towards their health and care.
In other words, this may claim for a rewording of patient engagement into “people health engagement”, in order to underline the importance of accompanying patients in the elaboration, acceptance and incorporation of their disease (and its treatment) in a new possible and positive planning of one’s own health and wellbeing.