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.

Rob Lamberts is an internal medicine-pediatrics physician who blogs at More Musings (of a Distractible Kind).

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  • Scott Brown

    One MAJOR tool that allows your patients to communicate with you even when they can’t communicate for themselves is MyDirectives, the all-digital advance care planning tool. It’s free, it’s secure, it’s meaningful use certified and Blue Button compatible, it will integrate seamlessly into whatever medical record system you finally choose. So ask yourself: Why aren’t you using it?

    • Dr. Rob

      Because I didn’t know. Thanks.

      • Scott Brown

        Give it a try with your patients – it’s a neat tool! Thanks for the blog posts – great writing!

  • Martin Lewitt

    Shouldn’t the “collaboration” extend to the patient making the value judgements? Once there is agreement and understanding of the risks and benefits of a treament or drug, and the patient is conscious and of sound mind, it is the patient’s values which should be applied. I wanted testosterone supplementation, even though the doctor thought my levels were a “normal” part of aging, assuming aging is “normal”. He applied his values instead of mine, even though I was familiar with the literature, and according to my values, the benefits outweighed the risks.

    • Dr. Rob

      I agree only if it doesn’t cause the doc to go against their medical judgment. Your example is a bad one in that you are asking for a treatment where the harm may outweigh the benefit. We take an oath to not willfully harm a patient, and giving a treatment that we think has a higher potential for harm than good is against that oath (in my judgment). He may have agreed to treat if he agreed with your reasoning, but we cannot be obligated to give care we don’t agree with.

      • Martin Lewitt

        Really? Too bad we don’t live in a free country, but one where MDs are allowed to collect monopoly rents on their prescription pad. Now I have to shop for another doctor. The “harm” is a risk, and doesn’t seem as well supported in the literature as the benefits. Denying access to the benefits is a “harm” as well, given the expense, the monopoly and the paternalistic controlling medical “expertise” culture.

        • PCPMD

          I wish you good luck in your search for the free country of your dreams.

        • C.L.J. Murphy

          “Too bad we don’t live in a free country, but one where MDs are allowed to collect monopoly rents on their prescription pad.”

          Mr Lewitt, if you’re arguing from a Libertarian viewpoint that you believe that the Federal government has over-reached by putting many drugs out of limits to citizens unless they can get them prescribed by a government-licenced doctor and then dispensed by a government-licenced chemist, you and your like-minded fellows need to take that up on a political basis with your elected representatives. You need to work on those in the legislature and the judiciary: it is they who hold the key to your “freedom” (as you see it), not the Dr Robs of the world.

          Try not to blame MDs either for working within the scope of the laws as they stand, or for not going against their conscience and the oaths they have made. It’s not their fault you can’t just walk into a Walmart and pick up whatever drugs you’ve decided you want, and it’s not within their power to change the system as it stands.


          • Martin Lewitt

            Mr. Murphy, I do work the political angle, but it is also legitimate to work to reform medical ethics. Dr. Rob is touting his education and experience, but as with the teaching profession, we live in a time when the lay patient may be better informed than the MD, both about the latest literature and more informed about his medical history and risks factors than he can educate the MD about in a 30 minute appointment. Having to take longer to educate the doctor about the current state of the medical literature just raises the costs for the patient and many MDs practices are too busy for this even if the patient is willing to pay for his time.

        • Dr. Rob

          So you think I have a moral obligation to not listen to my own training and experience, instead listening to a patient’s opinion? You think I should essentially be a vending machine for prescriptions? There is another word for that: prostitution. You want someone who will compromise their professional integrity for the sake of “keeping the customer satisfied.”

          As I said, you have the right to leave your doctor and shop around for one who is willing to put down their education and experience and instead do what ever is best for their business. I am sure you can find a doctor who will give you that prescription, and that makes me sad. I am willing to lose patients for the sake of doing what I feel is my moral obligation: to do no harm. You can call that abuse or arrogance. I will gladly wear those labels if the alternative is to is to become a “doctor of ill repute.”

    • azmd

      Aging isn’t “normal??” Who knew? I really must be behind on the literature…

  • C.L.J. Murphy

    “Patient engagement” is in danger of becoming one of those fine-sounding but slippery — and ultimately meaningless — buzzwords, much like “sustainability” and “fairness” have done. One wouldn’t be surprised if there weren’t already a blog post here on “Building a fairer, more sustainable practice through patient engagement”. Or “Building sustainable patient engagement through fairness”. Also, “meaningful use”.

    /”When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”/

    Good for you trying to pin the bugger back down to a true, err, “meaningful use”, and best of luck with your patients.

  • southerndoc1

    I still have no idea what patient engagement is. Can anyone give us a simple, non-jargony, grammatically correct one sentence definition of the term?

  • Betsy Bennett, Ph.D.

    Thanks for this post. I can also get snarky over “patient engagement”, mostly because it never seems to translate into anything meaningful once it’s (supposedly) put into practice. I would like to suggest one more item for your list of “must-haves” for your practice’s EHR: How about a system that’s also easy for you to use? Sorry if this was implicit in your list, but I wanted to state this explicitly. I believe the doctor patient relationship is indeed a relationship. So both parties must have what they need to make that relationship optimally functional. As it stands, I meet far too many doctors and allied health professionals who find that EHRs are so poorly designed that they meet no one’s needs. Good luck with your search. Perhaps this post will generate some helpful suggestions.

  • AlereACS

    Alere Accountable Care Solutions (a subsidiary of Alere, Inc.) has an HIE platform that would most definitely be worth your time to see! By the sounds of your article, it is the exact, revolutionary, [truly] patient centered system that you are looking for. If you’d be interested in viewing a quick demo to see what it’s all about, or would like further explanation, please contact me and I’ll be happy to set something up!

  • Leonard Kish

    I agree with 99% of what you’ve written, but I’ll posit the frustration is not with the concept, how it’s being used.You’re right that it is communication, but that doesn’t mean you can’t have a communications strategy. What works for what patients? How do I find out?

    It’s a new science, so how it’s defined will emerge over time, but at least, in the age of payment reform and meaningful use, at least it’s no longer ignored!

    It’s also about a bit more than communication. It’s also about attention. Most people don’t care to think or talk about their health until it’s too late, so trying to communicate with someone not listening won’t get you very far. Since the original “blockbuster” article, which was referencing efficacy, not sales, I’ve hypothesized that some of the success Kaiser had in cardiac care was because having a heart attack will tend to get your attention:

    I have mixed feelings about having engagement as a central to meaningful use, a worthy goal, but it does breed the “check the box” mentality of those who don’t really care about communicating with patients.

    The bottom line is if we paid for health instead of sickness, there would be a lot more of whatever it is we want to call it.

    I’ve written about the disengagement context in which we’re working recently,

    Whatever it’s called, it’s not simple, and doing it effectively will require a strategy.

    • MightyCasey

      “The bottom line is if we paid for health instead of sickness, there would be a lot more of whatever it is we want to call it.” No sh*t, sir!

      We’re in the process of the idea of the approach of looking at doing that (tortured syntax fully intended), but the dots are not yet connected between “look at me when you’re talking to me” and “what’s the billing code for that?” I live in hope that they may be, some fine and sunny day. But we ain’t there yet …

  • Martin Lewitt

    Perhaps “patient engagement” should be viewed as a continuum. From zero engagement on the left to full engagement on the right.

    Zero engagement would be an unconscious patient, or one too ignorant to serve as more than a source of data, or one believing in central planning and equality who wanted decisions made for him.

    At the other end of the spectrum is the patient who is fully engaged, his role in his healthcare is analogous to someone who is his own general contractor in construction, the various doctors and other providers are subcontractors, performing their craft under his supervision. He assumes some responsibility in preventing medical errors, by checking prescriptions and treatments himself for correctness and evidence based efficacy, risks and benefits.

  • Wyvonia Woods Harris

    This is a message to share because we are in a season where we all talk “whole living” but we don’t listen to the living who know how to love life to the end.” Communication, Collaboration, Organization and Education are key to living whole to the end.

  • sarah93

    It’s so offensive to set up a system in which two parties get to see one another for 15 minutes, one party is required to keep his/her face stuck in a computer and the other often is not allowed to discuss more than one or two concerns and then have the gall to talk about “patient engagement.” There’s a forest in all them trees, folks.

    • Leonard Kish


  • Martin Lewitt

    We need less barriers to engagement, but the system appears to be throwing up more. Screening guidelines are going to statistically based and bureaucratically trailing the literature. The engaged patient, tracking the literature, is going to have to fight more battles with less hope, to get state of the art care. No longer will he be able to count on his MD to be his advocate, payment bundling is going to pit the financial interests of the provider against the patient, turning the “care giver” into a death panel.

  • anne weiler

    Patient-centered healthcare is another funny term. Who are you going to treat if there is no patient? ;)

    We think the way past the records focus is to go around it, securely of course.