Patient engagement has become, over the past few decades, a focal interest of many stakeholders in the healthcare world. Consumer groups, progressive doctors, health policy wonks, and all sorts of other organizations are pushing for more patient involvement and activation in the care journey in an effort to leave behind the era of ‘white coat paralysis’ and unilateral decision-making. Engaged patients don’t just have some sort of moral appeal; in fact, research shows that “people actively involved in their health and health care tend to have better outcomes – and, some evidence suggests, lower costs.” Thus, engaged patients can help us satisfy at least two thirds of health care reform’s Holy Grail, the Triple Aim: lower cost, higher quality and improved patient experience.
I have been thinking about patient engagement recently because I have spent these first two weeks at my summer internship exploring the ways it is relevant to various healthcare stakeholders. Why might a pharmaceutical company care about engaging patients in their care process? Or a doctor? Or the patient himself?
And the more I’ve thought about it, the more I’ve come to realize what a happy coincidence it is that I was assigned to work on this project. After all, patient engagement is personally relevant in two ways – in my research, but more proximally in my own experiences as a patient with rheumatoid arthritis (RA).
RA is a health condition that lends itself to a whole bunch of different treatment options. Over the past three years, my ability to engage with my doctors, ask questions, give feedback, express preferences, etc. has been incredibly important to successful treatment and chronic care management. Were I not vocal and engaged about my experience with each of the four successive drugs I tried before I found one that worked, it may have been harder for my doctors and me to find the most appropriate medicine. Giving feedback to my doctors helped them choose and adapt a treatment plan over time.
At the same time, these themes all emerge in the research I’m doing on cost-of-care discussions among RA patients and their physicians. Broadly, we’re investigating what these conversations look like when patients face high costs, and how (if at all) the problem gets resolved. We’re still in the midst of analyzing data, but I feel comfortable saying that the engaged patients – those who ask questions, express preferences, and work as a team with their physician to arrive at the most appropriate care plan – more easily, if not more often, reach acceptable resolutions to their high-cost problems.
Perhaps the shining star of the patient engagement community, E-Patient Dave has done a lot of writing and advocacy work around activating patients in their own health care. He describes an e-patient as someone who is “equipped, enabled, empowered and engaged in their health care decisions.” When Dave was given a terminal cancer diagnosis early in 2007, he got involved in the e-patient movement and quickly became its poster child. Against the odds, his cancer went into remission in July of that year, and he has since devoted himself to helping patients across all different types of conditions – not just within oncology – become more involved.
Clearly there are lots of pieces that need to come together for patients to be able to engage in their health care, but from the patient perspective, I think it boils down to the first bullet on E-Patient Dave’s list of ten ways to be a more engaged patient. Working to preface interactions with providers and clinical staff with the following attitude can have a huge impact: “I’m the kind of patient who likes to understand as much as I can. Can I ask some questions?”
It’s important to remember that an engaged patient does NOT have to be an adversarial one. (See: the patient who demands a prescription for the drug they saw on television.) Instead, successful patient engagement centers on forging meaningful, balanced patient-provider relationships. Operating in a shared decision-making model – one form of patient engagement – can be especially helpful for complex conditions like RA.
Because there are so many treatment options, many of which can have similar effects on a patient, there could be multiple “right” choices. For instance, biologic drugs like Enbrel or Humira can be extremely effective at relieving symptoms and slowing the progression of the disease, but they also require self-injection, constant refrigeration and can expose patients to a significant cost burden. Thus, some patients might prefer less intense drugs, like methotrexate – even if it means taking a couple drugs to achieve the same effect – which comes in pill form and is generally much cheaper.
Patient engagement is certainly not limited to addressing cost problems; it is also vital to designing a care plan that satisfies all of the patient’s preferences. The only way for a provider to know these preferences is through dialogue, broadly defined (i.e. face-to-face, over email, through an online patient portal, from survey responses, etc.).
Healthcare is in the midst of a sea change – there’s payment reform, delivery reform and health care reform writ large. But perhaps one of the most important reforms, little talked about in the news, is what I’ll call patient reform. Equally important to how we pay for and deliver health care is how we consume it. Engaged, activated, curious, educated patients are critical pieces to the healthcare puzzle; they can improve their own clinical outcomes, and their cost savings can have broader impacts on the system.
Max Stayman is a Trinity senior. His column will run biweekly in the fall.
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