Patient engagement as way to inform quality improvement is becoming more and more common. This is a process by which patients (and/or their family caregivers) are asked to use their experiences with health care to help improve policies and programs within organizations. While this form of engagement is related to the imperative for more informed – and shared – decision making by patients with respect to their own care, I argue that these are different forms of engagement. After all, the social (and political) processes are quite different when one is asked to make decisions about one’s own body, as compared to informing decisions that may have far reaching implications for other patients, members of the public, professionals, and administrators.
Putting aside the social and political complexities for a moment, the idea is that patient engagement will help to improve our health care organizations. To make them more humane, more efficient, more anchored in the needs of patients, more capable of supporting our joint aspirations for compassionate quality care. While there is growing support for the ideals of patient engagement – it remains a social process, like many other attempts to change health care organizations. And the success of the efforts will depend largely on the design and implementation of these programs.
How are these programs working? And for whom? The most challenging question of all – which may seem deceptively simple – is “what do we mean by working”?
To begin to understand how these programs are working, we need to first understand what kind of impacts we collectively hope to see. Sometimes we talk about patient engagement programs in a technical way: the knowledge that patients have will allow for better program designs. Sometimes we talk about patient engagement programs in a democratic way: as the ultimate stakeholder in health care, patients have the right to inform how health care is delivered.
But, these two different rationales – technocratic and democratic – imply divergent ideas of impact. Consider this: if patient engagement is primarily a technical exercise to improve systems, does this imply that there may be a scenario where patient satisfaction is so high – health care systems are so well designed – that we will not need patient engagement programs? The need for less patient engagement may actually be a demonstration of the success of previous patient engagement programs.
In contrast, if patient engagement is primarily considered a democratic right, it is hard to imagine a time where there would be an argument for less patient engagement. More and more patient engagement might be considered an indicator of a robust dialogue.
I’m not arguing that one form of engagement is better or worse. And I believe that patient engagement programs are often a mix of various rationales.
Yet, if we want to sincerely understand how patient engagement programs are working, we need clarity about what sort of impacts we hope to see. In short, we need to understand the “use” of patient engagement: as a technical exercise, a democratic one, a social movement, an opportunity for deep reflection. Only then can we do the careful and collective work of examining impacts.
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