Patient Engagement Needs a Definition

This is another great blog about patient engagement! The author is correct that there is no standard definition for patient engagement. I can offer a one-word definition that anyone can understand - “Communication.” This does need to be a two-way communication. I will also quote from Dr. Rob Lamberts - “Communication isn’t important to health care, communication is health care.” I like to use this because too many doctors forget this! That is why they have come up with the term “patient engagement” to muddy the waters.

In the exam room, too many doctors talk at us and not with us, go on autopilot as if we aren't there, and too often come up with the incorrect cause of why we are there. I am upset because now doctors will use this term as a way to convince others that they have meaningful use of their medical health records (MHR) or electronic health records (EHR) when in reality, it is only the records they are interested in for billing efficiency.

It is true that our health care system cannot afford another process that allows competing commercial interests to derail and hold hostage physicians and patients in the delivery of affordable patient care designed to improve outcomes, enhance patient experiences and reduce costs.

Starting in the 1990's, patient engagement has meant different things to different people and is no clearer today than it was then.

Last year I was in a doctor's office and this was on the wall - Patient Engagement is what the Patient Activation Measure score dictates. I knew that the terms could be used differently, but this did surprise me. The doctor did see me looking at it and took it down. Had I known then that I would not be seeing him again, I would have made some remarks, but I did not.

This reminds me of an earlier blog from December 16, 2014 titled Patient Engagement Is Backwards. This blog shows that the way doctors and hospitals see patient engagement is the reverse of what it needs to be. Our healthcare system discourages patient engagement by discouraging honest, straightforward communication. Many doctors patronize us and feel they are the only source of information we, as patients need. They talk at us instead of with us and many belittle us because they don't receive the information from us that is already in their records and they are too lazy to look up, or are not accessible because one electronic record will not communicate with another electronic record. HIPAA is often blamed, when it is the proprietary electronic systems that are to blame.

In reality, patients have no choice but to be engaged. They are provided these details in an inefficient way that causes a lot of frustration, worry and fear on top of already stressful medical concerns. Physicians need to think less about the patient being more engaged, and focus on how they can simplify, encourage, and automate engagement tools on behalf of the patient. People are accustomed to integrated, automated, 24-hour customer service in almost every other industry, but the healthcare system is backward.

An Elusive Definition and a Discussion

This topic has been growing and has been presented in many other places besides the five references I will present. The topic is “patient engagement.” The term has been around since sometime in the 1990s, or maybe earlier, but really came into full use in 2012. My first exposure to the term was in Dr. Rob Lambert's blog here. In turn, I blogged about it here.

The definition is very loose and depends on who is defining it. Dr. Leslie Kernisan does a decent job of defining the phrase, but other people want to define the term as well. When the defining will arrive at one meaning remains to be seen. Back to Dr. Kernisan's definition, which says, “Supporting patient engagement means fostering a fruitful collaboration in which patients and clinicians work together to help the patient progress towards mutually agreed-upon health goals.”

“In other words, to truly foster patient engagement, it's not enough to just work together more closely on achieving a given health outcome. It is also important to work together on deciding which outcomes to pursue, why to pursue them and how to pursue them. In doing so, we engage patients in a meaningful care partnership that respects their priorities, preferences, perspective and situation. Communication with patients is, of course, essential to all of this. This is why any innovation that improves a patient's ability to access and communicate with health care providers is proudly labeled as "patient engagement."

To me, all this is fine, but I still prefer what Dr. Lamberts says. “Communication isn't important to health care, communication is health care. Care is not a static thing, it is the transaction of ideas. The patient tells me what is going on, I listen, I share my thoughts with the patient (and other providers), and the patient uses the result of this transaction for their own benefit.” Bold is my emphasis in both paragraphs.

“But our fine system doesn't embrace this definition. We indict ourselves when we talk about "patient engagement" as if it's a goal, as it reveals the current state of disengagement. Patients are not the center of care. Patients are a source of data so doctors can get "meaningful use" checks. Patients are the proof that our organizations are accountable. Patients live in our "patient-centered" medical homes.”

The Center for Advancing Health (CFAH) says, “Here is the CFAH definition of patient engagement (PE): "Actions people take to support their health and benefit from their health care."

The last definition is not that of most physicians and if you read the link above, they list six overarching themes which do not fit with the definition. Then if you read this blog by Jessie Gruman, president and founder of the Center for Advancing Health, you can understand a little more for the reason they are pushing this philosophy.

I admit that I have a very strong bias for what Dr. Lamberts has to say about patient engagement as is does not foster good communication between doctors and patients and is contrived to satisfy the “meaningful use” for receiving money for implementing medical health records. This in turn makes money for the doctors and makes billing for medical insurance reimbursement easier.