Getting Engaged



\”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 (with a smiley face) 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 Kevin MD.
  • 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.

15 thoughts on “Getting Engaged”

  1. (1) The kitchen is for cooking, not measuring.
    (2) Companies earn ‘Epic’ profits…laughed so hard the tears ran down my leg.

    Peter Elias

  2. Every time I read one of your articles I get inspired and feel that we’re long overdue for a Healthcare IT renaissance. But software companies are still struggling to solve today’s problems of billing, claims, insurance, payment, and regulation. That’s what providers want, especially hospitals because that’s where the money is. This sucks all of the energy out of building software to better the doctor/patient relationship. I develop for an HIT software company and I mentally struggle with this every day. How can the industry be flipped around?

  3. I believe the solution is to build something better and prove that the curent model is not the only choice. Software changes do have to go hand-in-hand with payment system changes, though. Otherwise the software undermines the business or vice-versa. That is actually what I am trying to do, and would invite a software developer to build something to help me prove concept.

  4. I echo the sentiments for healthcare IT renaissance. In the spirit of Patient Safety Awareness week just passed, I’d love to hear any examples you have on how patient engagement and communication, when it’s regarded as a small component of health care, impacts patient safety.

  5. If your “invite” is actually an invite, I would love to hear more about your ideas, what you want, critiques, etc. It is something that interests me and my colleagues quite a bit. I can’t say that I could produce what you’re looking for, but I want to help as I can. Perhaps this is an opportunity for a start-up. Feel free to shoot me an e-mail.

  6. From my perspective the only solution is to show people what the alternative looks like. There is probably not a market for it at this point, but just as roads are necessary for selling cars, the marriage of a good system with an infrastructure to support it may end up changing everything. Docs may resist, but if they actually see a benefit of doing so (in the current system open notes are more likely to draw them away from their regular duties, so they see no benefit for themselves) they will either embrace by choice or be compelled to do so by sound business.

  7. The problem is whether there’s a market outside of Dr Rob and a few other like-minded folk. See for example

    “A survey of 3,700 doctors in eight countries showed that only 31 percent
    believe that patients should have full access to their own medical
    records via electronic means.”

    I found the article depressing because it seems a lot of doctors don’t understand that giving patients record access is not necessarily a landgrab for all the doctor’s own notes. For example IT helpdesk systems have long recognised that some discussion happens “in the presence” of the person with the problem, and some happen in private (which yes, sometimes involve someone saying “problem seems to be the user forgot to plug in his computer – who’s breaking the news to him?”).

    There are some genuine problems with open e-access to medical records of course (especially with teenagers / young adults who may be forced to surrender their medical privacy to their parents and other relationships where there is a power imbalance). There are technical solutions to such problems – there’s no reason to throw out the baby with the bathwater.

  8. This is only the second post of yours I have read. (I read the letter to HIPAA via THCB.). I was wondering…are you hiring? :0)

  9. Danielle Gillard

    “Communication takes time and it is not reimbursed,” you certainly have a way with words. If this is how you respond to the term “patient engagement,” I’d love to know what you think about the Ultimate Wedding Ceremony book:

  10. Love this post! Can I be a contestant? Trick question: patient or provider?I didn’t get to HIMSS this year, but the title for one talk is a symptom of the problem: “How to Make Patients Your Partners”. We have a philosophical crisis. And blindness to evidence we already know. There’s been decades of research on motivational interview ‘talk’, shared decision ‘talk’ (now called participatory medicine) — and a river runs through it — you can’t MAKE people think or do something! What’s missing to your excellent list of goals is Openness. We haven’t taught health workers, especially doctors, that a requirement of their work is to Allow Patient Experience to Contribute to your work. Let Patients Help, as ePatient Dave says. Only way it can happen is for people to start with an open mind, open heart, open door.

    BTW, that 8-country survey mixed up two important concepts. One, letting EHR data out. Two, letting patient entered data in. If they separated these, responses would likely have been much more positive…and they would have identified a sweet spot to begin designing Let Patients Help/patient entered data.

  11. I share your frustration. As a caregiver, I feel like all the different doctors I take my sister to should communicate with each other and my sister more, but time is of the essence because money is to be made. 🙁 Good blog.

  12. Hi there,I work for Planetree, an organization that created the standards for patient-centered (engaged) care about 35 years ago – and is still going strong. Although you didn’t mention Planetree in this blog – you’re absolutely right that it’s not a strategy, it’s care. One of Planetree’s central tenets is access to information. This means the patient not only sees the medical record, but has it shared/interpreted – and is able to write in it. We’ve been helping organizations accomplish this since the late 80’s.
    Check us out:

    Joyce Burkhart
    Community and Education Coordinator – Planetree

  13. Though interesting, still could have been made much more informative by adding relevant information.

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