Despite the growing “buzz” about patient engagement and the different attempts to define how this is achieved, patients’ voice about this process has been fairly neglected so far. At present, scarce attention has been paid to patients’ perspectives about what engagement in healthcare is, how desirable it may be, and situations and the drivers may sustain it: Evidence based studies that have aimed to give a voice to patients, to their experiences, and to their will to engage in health and care, indeed, are still very few (Barry & Edgman-Levitan 2012; Barello et al., 2014). From our perspective, this lack of “ecological foundation” of the concept of engagement is at risk to becoming a lost occasion for really innovating and improving healthcare service sustainability. In other words, we believe it key to “see engagement from patients’ eyes” to really gain insight to orient healthcare actions and address policies priorities.
By adopting a consumer psychology perspective, and based on more than 10 years of research and practice dedicated to the in-depth understanding of patients’ perspectives about their illness journeys, we developed the Patient Health Engagement Model – PHE model, that may be particularly useful to understanding patient engagement and how it develops. The PHE model allows to understand the simple and straight forward approach to the experiential and psychosocial characteristics of the patient engagement Precisely, we define patient health engagement as a multi-dimensional psychosocial process resulting from the conjoint cognitive, emotional, and behavioral enactment of individuals toward their health conditions and their management (Graffigna et al., 2014).
Patient health engagement is a dynamic and evolutionary process that involves the recovery of life projectuality—even with the disease. The patient engagement process results from the interplay of three psychological dimensions: feelings, cognition and behavioral enactment. These psychological dimensions play different driving roles, although complementary, in the subsequent phases of the process by constituting a key lever on which to intervene and promote patients advancement in their engagement journey..
In particular, according to our model patient engagement is a process that features four engagement positions: blackout, arousal, adhesion, and eudaimonic project.
In this stage of the engagement journey, the disease onset and its management is lived by patients as distressing and unacceptable; they have not yet acquired effective coping strategies to manage their new health conditions, and they are not aware of what is happening in their bodies. Precisely, patients in this stage still have poor literacy about their health conditions, and they cannot easily elaborate the received information about their respective diseases (cognitive blindness). Moreover, patients feel blocked and unable to orient behavioral conduct to enable self-management of their diseases (behavioral freezing). Patients in this stage appear completely focused and overwhelmed by their illness experience, and they tend to “put aside” other interests or needs.
In the position of “arousal,” patients are hyper-attentive to every signal in their bodies (emotional alert). Symptoms are perceived as an “alarm” that worries the patient and may cause overwhelming emotional reactions. Compared to the state of “blackout,” patients are better informed about their health condition, although their health knowledge is still superficial and fragmented (superficial knowledge). Moreover, they are behaviorally unable to self-manage their diseases and treatment prescriptions (behavioral disorganization).
In a more advanced stage of their engagement journey, patients acquire a broader spectrum of health literacy (cognitive adhesion) and behavioral skills (formal adherence) to comply with medical prescriptions and feel confident in their own emotional strength to cope with their illness. Furthermore, patients have accepted their health conditions and have elaborated the negative emotions connected with the critical health events (acceptance). However, patients are still not completely autonomous in managing their health conditions and related treatment rules (e.g., healthy lifestyle and correct medication regimen). Particularly, patients experience difficulties in dealing with those prescribed rules and life style regimes every time their life contexts change (e.g., going to holiday, travelling for work
In the “eudaimonic project” position, patients have fully accepted their condition; furthermore, they have understood and elaborated that the “identity of patient” is only one possible identity. They are able to better incorporate the disease into their life projects, and they are no longer overwhelmed (such as in the blackout phase) by their health conditions; rather, they are able to integrate other spheres of their lives (elaboration). To achieve this emotional elaboration, they use internal resources to project satisfactory life plans for their futures. Patients gradually become co-producers of their health, and they are capable of enacting more effective health management. Furthermore, they become more satisfied by their quality of life.
In this process, patients become more active in effectively search for information about their disease conditions and management. This allows them to attribute full meaning to their healthcare experience (sense making) and enact self-management behaviors effectively, in due time, even when life contexts change (situated practices). In this position, patients also develop a more mature and psychologically sustainable perspective about their diseases, which can now be better integration into their life projects.
Only recognizing the position of engagement of your patients, their psychological experiences and their needs you would be really able to foster their engagement. From this perspective, the PHE model, offers an important support for healthcare professionals and managers to comprehend the stage at which their patients are at, which will help them plan better patient-centered interventions that are truly able to improve patient autonomy and competence in health management. Precisely, the PHE model is conceived such as a compass to orient the assessment of patient engagement in clinical consultations, to unveil patients’ healthcare service expectations and un-met needs to plan new services, and to assess the engagement goals achieved by specific interventions.