This is what patient engagement really is

“Patient engagement.”

What is patient engagement? It sounds like a season of The Bachelor where a doctor dates hot patients. It wouldn’t surprise me if it was. After all, patient engagement is hot; it’s the new buzz phrase for health wonks. There was a even an entire day at the recent HIMSS conference dedicated to patient engagement. I think the next season of The Bachelor should feature a wonk at HIMSS looking for a wonkettes to love.

Here’s how the Internets define patient engagement:

The Get Well Network calls it: “A national health priority and a core strategy for performance improvement.”
Leonard Kish refers to it as “The Blockbuster Drug of the Century” (it narrowly beat out Viagra) – HT to Dave Chase.
Steve Wilkins refers to it as “The Holy Grail of Health Care” (it also narrowly beat out Viagra) – HT to KevinMD.
On the HIMSS Patient Engagement Day, the following topics were discussed:
- How to make Patients Your Partners in Satisfying Meaningful Use Stage 2 Objectives; Case Studies in Patient Engagement, session #64;
- Review Business Cases for Implementing a Patient-Centered Communication Strategy and Building Patient 2.0, session #84;: and
- Engaging People in Health Through Consumer-Facing Devices and Tools, session #102.

So then, patient engagement is:

a strategy
a drug
a grail (although I already have a grail)
a “meaningful use” objective
something that requires a business case
something that requires “consumer-facing devices and tools” (I already have one of those too).

I hope that clears things up.

So why am I being so snarky about this? Why make fun of a term used by many people I trust and respect? I was recently discussing my ideas on a communication-centered medical record with a colleague. At the end of my pontification, my friend agreed, saying: “you are right; communication is an important part of health care.” I surprised him by disagreeing. 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.

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.

Replacing patients as the object of our attention (and affection) is our dear friend, the medical record. We faun over medical records. Companies earn epic profits from medical records. We hold huge conferences to celebrate medical records. We charge patients money to get to see their own medical records. We even build special booths (portals) where patients are allowed to peer in through a peep hole and see parts of their medical records.

This is why I’ve had such a hard time finding a record system for my new practice. I want my IT to center on patients, but medical record systems are self-absorbed. They are an end in themselves. They are all about making records, not engaging patients. They are for the storage of ideas, not the transfer of them. Asking medical records to engage patients is like asking a dictionary to tell a story.

The problem is, documentation has taken over health care. Just as the practice of a religion can overshadow its purpose: the search for God, documentation chokes out the heart of health care: the communication of ideas. It did this because we are paid to document, not communicate. Communication takes time and it is not reimbursed. Communication prevents unnecessary care, which is a revenue stream. Communication eliminates waste, and waste is food that feeds the system, the bricks that build the wings to hospitals, the revenue source that pads IT budgets.

So what’s a doctor to do? I’m not sure. I am still looking for a solution that will meet the central goals of my practice:

Communication – health care is a hassle, with communication relegated to the exam room. I want care to be easily accessible for my patients,using IT in one of its strongest areas: tools for easy communication.
Collaboration – the patient should be engaged, but in a two-way relationship. This means they not only should have access to their records, they should contribute to those records.
Organization – I want a calendar documenting visits, symptoms, problems, medications, past and future events in each patient’s record. I also want a task-management system I share with patients to make sure care gets done.
Education – I want to practice high-quality medicine, care that is informed by good information and the best evidence. Why not do a yearly stress test? There’s evidence for that. Why not use antibiotics for sinus infections? There’s evidence there. Why use an ACE inhibitor to control the blood pressure? I need to be able to support my recommendations with data, not just “because the doctor said so.”

The point of all of this is the moving of medicine from an industry where money is milked from disease to a communications network where diseases are prevented. ”Patient engagement” that is done to the patient for the sake of the doctor or hospital is a sham. Engagement is about interaction, listening, and learning in relationship to another person. Engagement is not a strategy, it is care.

If only I could find the tools to make this happen.