Precision Patient Engagement
Recently my mother, a retired registered nurse, told me something she was taught in nursing school which today most of us would find unsettling. Patients with terminal diseases, she was told, must not be informed of their illness. Only the families are to be notified, and it’s up to them to decide what, if anything, to tell their dying loved ones. The patient was powerless.
Thankfully, we’ve come a long way. Now more than ever we hear about “engaged patients” who take an active role in their care: They ask questions, they consider options, they make treatment decisions. And it’s led to better outcomes and improved quality of life.
But many patients still remain reluctant to speak up. Why? In some cases it’s the cultural norm. In others it’s an unawareness of one’s rights as a patient. And in others it’s the perception that the Doctor Knows Best, and patients simply aren’t qualified to make decisions in their care.
In my work I’ve helped advocates, educators and industry develop strategies to bolster patient engagement. Often they seek ways to empower patients with the information and confidence to talk to their providers about risks and benefits of various treatments. And early in the consultation they will frequently ask: What’s worked in the past?
It seems like a reasonable question, but it can lead you down the primrose path. Engagement isn’t one-size-fits-all; a campaign that clicks with one patient can miss the mark with another. It’s critical to know which specific segments of the patient population you hope to reach and tailor your approach accordingly.
Let’s say an organization develops an infographic to encourage cirrhosis patients to get more involved in their care. They decide it should target men, where incidence is 50% higher; they include a checklist of important questions to ask the doctor, in light of the many treatment options to consider; and since each drink translates to one less week of life, they include a stern message to eliminate all alcohol consumption.
The infographic launches globally. How does it do? In Latin America, it’s largely ignored because the material was geared toward men in a region where women are often the ones to seek information and make health care decisions on behalf of their male family members. The question list doesn’t achieve the desired result, because information relayed at the doctor’s office is frequently missed by patients with life-threatening diseases. Reception is also poor in France, where research shows that French wine drinkers also tend to practice several healthy habits like keeping active and eating more than an average amount of vegetables and beans. What’s more, for some segments, the medium itself serves as a barrier. Among the elderly, infographics with small print can strain the eyes, or be difficult to process due to the non-traditional presentation of the content.
Today we hear lots about the “precision medicine” movement to tailor medical treatments to the individual characteristics of each patient. The same sort of precision must be applied to patient engagement. In Precision Patient Engagement (PPE), cultural sensitivities, appropriate literacy levels, the integration of technology, and even the behaviors of the clinicians themselves need to be evaluated as you shape your engagement strategy. Continued monitoring of the strategy’s impact is also important, as you must measure patient retention of information and behavior (e.g., adherence).
Clearly, there are challenges. An across-the-board Precision Patient Engagement (PPE) plan takes time and resources that may not be fully available. It’s important that each situation be evaluated, and based on available resources. Pathways towards winnable levels of PPE can be defined, developed and successfully pursued. All steps toward PPE are helpful.
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