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.

Is Patient-Centered Health Care Beneficial?

It is somewhat surprising that in today's world, with our smart phones, internet savvy and media hype, when we go to the physician for a check-up many of us tend to sit back, listen and nod in response to a doctor’s advice on our conditions or treatments. This does not sound very participatory, does it? Why does this happen?

It is unfortunate that many patients do not want to be participatory and even more do not want to be empowered. On the other side, many doctors do not want empowered or participatory patients. They have gone to great lengths to confuse patients and continue their overly paternal ways. They claim they are doing what is in the best interest of their patients, but in reality, they often ignore obvious clues and misdiagnose what the patient presents. They insist on talking at the patient and not with the patient.

For a prime example of how poorly these doctors do their medicine, read this blog from Joslin Diabetes Center. Doctors can be idiots at times and as I read this blog, those were my exact thoughts.

Two laws are now stepping in and putting these doctors on notice that they need to provide more to patients. The legislation that mandated doctors to have electronic medical records (EMRs) or (EHRs) electronic health records also mandates them to provide patient portals. This forces doctors (providers) to more actively engage patients by providing them with the capability to electronically view, download and transmit relevant information from their provider’s electronic health records, including lab test results, a list of current medications, and hospital discharge instructions. The legislation also requires that physicians engage in email with patients.

Then we have the latest legislation that mandates and puts the doctors on notice that they must communicate with their patients of earn quality points that will determine their pay structure and incentives. In anticipation of this and the provisions of the first legislation, these physicians have developed new terms to muddy the waters and push back. Meaningful use and patient engagement are the terms these physicians have invented to work their way around these requirements.

If you are one of the patients that have been given access to your EMR, then you know what I say is what happens. When you receive their emails, there are statements as part of your medical appointment that are not happening. Supposedly, you have received a pamphlet or page relating to the purpose of your visit, which you have not received and probably never will receive. Mine were counseling I supposedly received about weight loss and another about concern for the purpose of the doctor visit. All the doctor needs to do is check a box and this is meaningful use when the paper is said to have been given to you.

Communication is definitely lacking, but the physicians can claim patient engagement. The theory behind this patient engagement is that when we have access to our medical information and we are assisted to the point that we understand what our care is all about, we will respond positively to our treatment options and take better care of ourselves. If this communication actually happened, I would be very happy. Instead, I have needed to go to the computer and research to find information about the problem that I saw the doctor to communicate with on the topic.

I will admit that some doctors are actually communicating and rebuilding the doctor-patient trust, but most doctors are not. I have blogged about some of this on 28 and 29 December 2013. Another good blog by Nancy Finn about what is supposed to be happening is a blog you should read and become familiar with because it does explain some items I have not covered in this blog. She does explain patient-centered better than I do and probably because I have not seen patient-centered benefits at this time.