If you Google “patient and family engagement,” you get 293,000 results. The term brings up discussions about care delivery, marketing materials from health care providers, and calls to action from patients and families. It is referenced in light of patient-centered medical homes, health information technology, and patient quality and safety. In short, the term is everywhere. But what do we actually mean when we talk about “patient and family engagement”?
In the February issue of Health Affairs, we present a patient and family engagement framework that we hope will be an organizing and catalyzing framework for the field. It is the product of many years of work; interactions with colleagues, patients and families; and multiple funding sources (in particular the Agency for Healthcare Research and Quality, the California Health Care Foundation, and the Robert Wood Johnson Foundation).
The patient and family engagement framework that we set out is an effort to provide:
1) a coherent set of ideas and concepts to help us all clarify and better understand what patient and family engagement is—and what it is not
2) a basis for thinking about our collective experiences and what we know
3) a set of assumptions, values, and definitions under which we can all work together
4) a way to ground current work in appropriate theories of action and existing empirical evidence.
As we conceive it, there are three critical aspects of patient and family engagement. First is what we call the “continuum of engagement,” where activities range from consulting with patients and families to working with them in shared leadership positions. Second is the idea that engagement occurs at multiple levels. It refers to individual health behaviors and engagement in direct care interactions, but beyond that, engagement occurs in organizational design and governance, and also in policy making. Finally, any discussion of patient and family engagement must include the recognition that there are many factors that affect the willingness and ability of patients to engage.
It is important to note that our patient and family engagement framework is not a specific road map or “how to” directive for achieving engagement. Patient and family engagement is a nascent field, and we still have much to learn about pathways to engagement, the development of interventions to promote engagement, and measures and methods to assess outcomes. But our framework is nonetheless a map of sorts—one that we hope shows the topography we all must be aware of as we proceed into this terrain as policy makers, practitioners, researchers, or advocates.