The Prepared Patient Blog published over two hundred articles in 2013 about what it takes for people to get the most from health care and how the system can be improved to make it feasible for us to do so. Two of the top ten posts last year were about defining and describing patient engagement from a patient's perspective (in contrast to a clinician's or employer's, for example).
In case you missed them, here's a recap of what engagement looks like to us – whether we are sick or well, whether we are caregivers or loved ones.
Here is how we define patient engagement:
And here is some elaboration on the differences between our perspective and that of other health stakeholders:
Popular rhetoric says that we have choices about and are empowered to participate actively in our health care. And of course, that it's time we take responsibility for our health. Many who speak about the need for us to engage in our health care confuse compliance with engagement. They assume that the only rational choice we can make is to behave consistently with our clinicians' directives, whether that means filling a prescription, losing weight or undergoing surgery.
But this is not how many of us hear these messages. The rhetoric says we have choices? We hear "You have the power to choose which doctor to consult and which advice you will follow." It says we are empowered to find good health solutions? We hear "Your web searches and new friends online can help you figure out what to do as well as your doctor can." The rhetoric says we are responsible for our health and health care? We hear "You are on your own."
What we hear is reinforced by reality: a paucity of clinicians who encourage and welcome our participation in our care and office visits that rarely allow time for in-depth conversations.
Saying "engagement" when meaning "compliance" supports the belief that we are the only ones who must change our behavior. Doing so misrepresents the magnitude of shifts in attitude, expectations and effort that are required of all health care stakeholders if all patients are to have access to adequate knowledge and support to make well-informed decisions...continue reading
First: From the perspective of patients, our engagement in our care is not defined by adherence to evidence-based standards but rather by our ability and willingness to make informed choices about every aspect of our health care. Sometimes – often, in fact – our choices are inconsistent with our doctors' recommendations or guidelines. Further, many of us believe that more care is better than less, that expensive care is better than cheap and that our local doctor and hospital deliver high quality care. There are few reasons to believe that we are naturally drawn to lower price service and technology options for ourselves and for those we love.
Second: Interventions to substantially change and maintain our health habits and self-care behaviors to better conform to medical recommendations and guidelines have been only marginally effective to date, leading to incremental shifts in individual behaviors. Further, while those changes may reduce our need for health care in the aggregate, at an individual level such behaviors have little to no impact on reducing the cost of care when we seek it...continue reading
Recent studies in the Journal of Personality and Social Psychology acknowledge the link between personal control and health outcomes, and identify inconvenient layers of complexity:
- Individuals differ considerably in their preference for making choices about their health care.
- Those who prefer to make a specific choice about their care benefit significantly more than those who prefer not to be involved but who nevertheless must choose.
In an abundance of enthusiasm for ensuring that we are, in fact, actively determining the course of our care, some clinicians ask us to make choices about tests or treatments. Sometimes this happens when formal programs are in place to support shared decision-making for preference-sensitive conditions such as PSA testing or back pain. And sometimes clinicians informally – and somewhat haphazardly – delegate decisions to us. The data from these studies also suggest that when faced with the opportunity to choose, we should always have a clear option to defer decisions about our care to our clinician or a family member.
Conversely, many clinicians still have scant enthusiasm for inviting us to express our opinions and preferences about treatments, tests and care. The objections are familiar: it will take too much time; we may make the wrong choice; we don't know enough to make an informed decision.
But as a patient, I ask you: What aspects of my health care are not preference-sensitive? Even patients who have passed control to a trusted clinician or caregiver are eager to reclaim territory lost. We value our autonomy and choice about most life matters, and most of us make unilateral – often uninformed – choices about when and where to seek care and whether or how to make use of it once we receive our clinicians' directives. As a result, some of our behavior is labeled noncompliant and is viewed as expensive and wasteful.
The invitation – and option – to join with our clinicians in making decisions about all aspects of our care will not necessarily improve our compliance with medical directives. But having the choice to work with our clinician to agree on a treatment plan that matches our preferences increases the probability we follow that plan and, in the process, reap additional benefits from participating to the extent that we are willing and able...continue reading
CFAH defines patient engagement as "the actions we take to benefit from the health care available to us." Health care insiders and stakeholders can review our engagement research and recommendations for ways to make people's participation in and understanding of their care more manageable. Members of the public – sick or well – can check out our Be a Prepared Patient tips and resources for practical advice on finding good care and making the most of it.