Health care systems around the world are feeling pressure to involve patients and family in a broad range of activities: not only direct clinical care but also research, priority setting, health planning, service delivery and quality improvement. Viewed by many as an important paradigm shift, this move has engendered the widespread adoption of patient engagement as an expectation in health care. There is little doubt today that patient-centred care and patient engagement are important principles that bring a variety of benefits to the health care system. The question is no longer whether we in the system should engage patients, but how and for what reasons.
In a hurry to engage patients in all things health care, managers, clinicians and researchers have largely ignored the significance of cultivating a culture that genuinely encourages and supports patient engagement at all levels. In particular, although we have discovered a plethora of ways to engage patients and family, many constitute tokenism, putting on a masquerade of patient engagement without conferring its benefits.
Health care institutions have established patient and family advisory committees, contributed to reams of research on patient engagement, hosted conferences dedicated to patient-centred care and patient engagement, and designed innumerable frameworks and tools for evaluating and soliciting patient engagement. Although these activities are essential for establishing an infrastructure that promotes and supports patient engagement, we have not yet made the concerted effort necessary to reshape the culture — the attitudes, beliefs and behaviours — of the health care system in a way that invigorates patient engagement initiatives.
Why change health care culture?
In order for patients to serve as active partners in health care system activities, we must go beyond establishing structures to the more important level of fostering a health care culture that places patients and family at its centre.
Professionals and institutions can start by setting aside the notion that they are the source of patient engagement; rather, they should focus on encouraging patients to demonstrate what engagement means to them. A culture that puts patients at the centre can foster “innovation and collaborative attitudes” that reduce the inefficient use of already limited health care resources and lead to the codesign of interventions that may be more relevant to and aligned with patient and public priorities.
Cultivating a patient and family engagement culture
Changing an organization’s culture is hugely challenging. It requires a commitment by all participating individuals to transform the values and traditions that ground their way of doing things. A shift in health care culture will demand dedication to dialogue among all stakeholders in the system.
Establishing a culture that fosters patient engagement requires us to consider the health care system from 30,000 feet. We have to first acknowledge that the system encompasses diverse roles, attitudes and beliefs that cannot and should not be melted into one perspective. For instance, power differences between health care stakeholders are largely unacknowledged, but they seep into and influence partnerships with patients. Those who hold power in the health care system tend to favour tokenistic gestures. For real change in culture to occur, they must be held accountable for engaging patients and family in a way that is conducive to effective patient partnerships.
We have to internalize the idea that patients should be at the centre of all health care activities. This requires enlisting patients in patient engagement activities and preparing them to collaborate, engaging staff to involve patients and ensuring that there is leadership support and strategic focus on patient and family engagement in health care institutions. Today, the majority of our work is based on data and evidence, which may have, ironically, sidelined the role of patients in shared decision-making. We need to bring the patient’s voice back in.
Finally, we need to communicate the objectives, processes and outcomes of patient engagement with honesty and authenticity. Communication should not be unidirectional, as has been the pattern in the health care system so far. We cannot expect to cultivate a culture that supports and encourages patient engagement when we obligate patients and family to follow the rules that we alone set: fitting into our busy schedules, coming to hospitals, sharing their views in the same language as “professionals,” waiting for a surgeon to be available. Instead, communication should be bidirectional, marked by the free flow of thoughts and ideas among all persons involved. Bidirectional communication is not just about hosting a discussion with patients and family; it creates an environment suitable for the unrestricted dialogue and exchange that can bring out insights that individuals might not reach on their own.
A health care culture that is truly patient-centred must be the ideal we strive for. It will benefit the system as well as those whom the system serves. We need to move patient engagement to the forefront of health care activities instead of just ticking the boxes on an institutional checklist.
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