Patient engagement is the term used to describe people that are motivated about their health and taking action accordingly. Engaged patients naturally like to interact with their health professional not just at the doctor’s office but in-between — with email, two-way data [the doctor sends the patient results; the patient sends the doctor stats like blood pressures, blood sugar, etc. for real time input], follow-up on lab tests — and anything else you might imagine that bears on health.

No one epitomizes the engaged patient more than Dave deBronkart, who is known across the world as “e-Patient Dave.”

Dave was diagnosed with Stage IV (i.e. metastatic) kidney cancer in 2007. He was already engaged in his own care, and with miraculous help from Boston’s Beth Israel Deaconess Medical Center – and an online community his doctor recommended – was able to survive his cancer. Now he is a sought-after keynote speaker and evangelist for patients becoming engaged in their own care. He collaborates with the medical community to make doctors and nurses see the value of engaging with patients in new ways.

After all, although today’s laws don’t say so, patient data logically belongs to you, the patient. It’s a simple idea that’s somehow revolutionary in the big business world of industrialized medicine, where a generation ago everyone thought nobody but a doctor had any use for such data. Dave speaks and writes about his experiences and champions other patients and doctors who work together in new collaborative ways.

I read his blog; I’d encourage you to read it also. Dave is enthusiastic about tech, which you may or may not like. But what struck me about the story below, edited for brevity, was how Dave’s wife Ginny handled her own bilateral (both right and left) knee arthritis in seeking a surgeon and bilateral knee replacements. It’s a great story. And as Dave points out, results will vary. But Ginny’s story is worth sharing.

What stands out to me is the level of engagement of her surgeon, Dr. Howard Luks (a doctor well known in social media circles), and the amount of homework Ginny did in selecting him and getting ready for her surgery to achieve the best possible outcome. The surgical innovation is kind of neat, too.

This post originally appeared on Dave’s blog, and is used with his permission.

The best of medicine: my wife gets the new “muscle sparing” knee replacement

By e-Patient Dave

Ginny at Half Moon restaurantOn Friday I posted this picture of my wife Ginny.

As you read this, bear in mind, your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.

The astounding story:

In this photo we were out to dinner, nine days after Ginny had both knees replaced. She walked into the restaurant using only canes – no walker, no wheelchair. The surgeon is Howard Luks, the social media orthopedist (@HJLuks), whom I met on Twitter in 2009, and the surgical approach he used is called muscle-sparing (or “quad-sparing”) minimally invasive surgery, part of a larger package of methods he uses, described below. Bottom line:

  • None of her muscles were cut
  • She had no transfusions
  • She has not needed to have any of her dressings changed
  • She left the hospital on day 3, was discharged from rehab 8 days after surgery, and today on day 12 we’re returning to New Hampshire, to continue outpatient physical therapy from home.

Of course she’s still on pain meds, tapering down, and her endurance is of course limited. But she is basically functional and able to live on her own if she needed to, or rehab wouldn’t have discharged her.

(Of course I have Ginny’s permission to talk about all this. Also, I’m an e-tool geek and she’s not, so I’m the one using the tools discussed here.) She was discharged from rehab after demonstrating (among other things) that she can safely walk up and down a full flight of stairs … six days after the surgery. She can get herself into and out of bed, into and out of our Prius, etc. She’s not speedy at any of it but she’s functioning reliably.

Again, everyone, please read this: your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.

The part Ginny played, as an activated, engaged patient

In my speeches I talk a lot about “patient engagement” – the patient as an active partner in health and care – but usually I’m asking healthcare to listen to and welcome patient voices. The flip side is equally important: the patient stepping up and doing as much of the work as they can.

In joint replacements this is essential, because nobody but you (the patient) can do the physical work required to recover after the surgery, and it can be hard.

Howard Luks with headset

Howard (he insists on being called Howard) says that in his experience the biggest reason knee replacements fail is if the patient simply isn’t willing to do his or her part of the work. It hurts – he says “You know why mob guys hit you in the knees? Because knee injuries really hurt!

Ginny was willing to do the work:

  • An essential part was “prehab” (a play on “rehab”) – two weeks of physical therapy before surgery, to get in practice for what the muscles would need to do after.
  • She also lost 20 pounds in the months leading up to the surgery, so her replaced knees would have less weight to lift and carry.

Another aspect is her choice of a surgeon who happened to be three hours from home. Ginny’s a retired veterinarian who’s done thousands of surgeries herself, and was on the New England Board of Veterinary Medical Examiners, where she was exposed over the years to many many doctors of varying degrees of excellence, so she has strong opinions about wanting someone good and decades of intuition about who that is. A few years ago she met Howard when we happened to be driving through his area, and when she decided surgery time had come, there was no question: “I want Howard to do it.”

Yes, my wife is an empowered, engaged, informed, activated patient. Imagine. (Unlike me, though, she doesn’t talk about it – she just does it.)

All of that happened before we learned about the new muscle-sparing approach. That turned out to be quite an unexpected bonus – we were prepared for the normal recovery that our friends and family had endured.

What it’s like to work with an “e-patient surgeon”

Howard Luks truly believes in making medicine more efficient. Like many docs I know, he’s suffering some from the changes in health policy and the sometimes obscene reimbursement rates he’s offered. (Know how much he gets paid by Medicaid for doing a knee replacement? $330!  Can you believe that??)  Installing their EMR and complying with Meaningful Use has cost his practice a big hit in productivity so far (appointment volume, and therefore income). But he sees the future and is pushing through into it, using whatever tools he can.

Cloud software tools

  • He’s a big fan of Twistle, a secure (HIPAA-compliant) messaging system.
    • This is a huge help if your doctor’s office(s) doesn’t / don’t have good, modern secure messaging; among other things, Twistle can include messages from multiple docs even if they work in different places. (It can integrate with EMR platforms, but most docs don’t consider that a necessity; Howard does, and he’s planning on doing it: “With machine learning and smart forms the platform can intelligently perform many useful functions.”)
    • BUT, and it’s a big but, just remember that without such integration, Twistle messages aren’t visible in each doc’s “real” system where they work. (I’m starting to think “Who cares??” for most messages, but for seriously important information I’d want to be very careful about where the information lives.)
  • He’s happy to communicate by any medium – email or anything. My feeling is that anything we need to look up later needs to be in the secure message system, and of course anything confidential needs to be there. But for casual questions, he’ll use anything. (Just remember, if you don’t use an “official” communication tool with your providers, don’t expect a response in any particular timeframe. Providers have a life.)

Pre-visit communication

You could say Howard is nuts, because he’s so committed to sharing empowering information with everyone who needs it; he also knows how to do SEO [search-engine optimization] so his content can get found: his site gets 9,000 new visitors per day(!!!) and up to 20,000 pageviews/day from around the world. Let’s just say the vast majority of them are not his paying patients. 🙂

Here’s an example of his approach: In my book Let Patients Help I said e-patients should ask “What’s your infection rate?”  Howard not only welcomed the question (“average is 0.8%; mine is 0.6%”), he described the protocol he uses to minimize it. I asked “Is that on your website?? I didn’t notice it” and he said “It probably should be,” and now it is.

The evaluation appointment

  • Prior to our first appointment I emailed him Ginny’s radiology images, so we didn’t need to take more images. (Howard gladly welcomed them, saving us time and saving everyone money.)
    • Thanks to Beth Israel Deaconess, where our primary care is, for giving us a free CD of the images (at time of service) and for giving us free online access to the radiologist’s report!
  • Howard Luks wall monitorHoward’s practice has flat-screen displays on the wall of each exam room (right), so we can look at images together and we can watch what he’s doing in the EMR, while he does it.
  • He gave us a clipboard with a pad labeled “What We Discussed,” to take notes on.

Between visits, when questions come up

In my first book Laugh, Sing, and Eat Like a Pig (my cancer journal) I noted that my world-class oncologist Dr. David McDermott welcomes dialog, including in email: once when I apologized for what turned out to be a dumb question he replied “I am happy to field your questions.”

Howard is exactly the same. Ginny is less verbose (ahem), so with her permission I messaged Howard (sometimes several times a day), and every time he responded within a couple of hours. In short, he recognizes that when patient and family have questions, it’s a sign of engagement. Plus, he says, he understands “most people are too afraid to ask questions… so I offer platforms to communicate which are less imposing than sitting on a cold bench in my office with the clock ticking :-).”

There’s more to the package than this quad-sparing surgery

Personally, my mind is blown by this new surgical approach, but Howard quickly points out that Ginny’s extraordinary outcome is a result of a program that has many parts:

  • Infection control (before, during and after surgery) (see his protocol, above)
  • TXA (tranexamic acid) – The Mayo Clinic cites TXA’s use in emergency medicine (e.g. EMTs using it to stop blood loss in injuries), but Howard noted that cardiovascular surgeons have used it for decades, and now he is, in orthopedics. Result: “less blood loss, fewer transfusions, less blood received which leads to fewer infections.”
    • TXA is also why she didn’t bleed enough to ever need her dressings changed, he says.
  • An engaged patient who understands their role (their responsibility for doing the work)
    • Includes doing the “prehab” as well as the rehab.
  • A doc who understands the patient’s expectations. He will ask a patient what outcome they’re after, and won’t always recommend surgery, even if from the first description of symptoms that seems obvious.
  • The surgical method (quad-sparing)
    • Note: He says patients who get the usual surgical method do catch up eventually; the benefit is in faster recovery time. “People gain back their strength faster with a muscle sparing approach. Thus they can sustain a faster rehab.”
    • Well, heck: I don’t know much about orthopedics, but I know people who’ve been out of week 12 weeks after having a single knee replacement, so being released from rehab in 8 days, functional, sure sounds like something worth knowing about as an option.
  • Multi-modal pain management. Ginny received regional anesthesia during the surgery, and Howard injects the inside of the knee with a cocktail of meds to take advantage of pre-emptive analgesia.  She’s now on four pain meds for different pain pathways.
    • “Pain management is incredibly important in these cases,” he says, “because it affects how able the patient is to do the work and regain strength. But too often people overlook that not all pain is the same – you can’t treat it all with opiates.”
    • Not to mention the horrid constipation that morphine, dilaudid etc can cause, sometimes bringing weeks of real suffering.

“All of that,” he says, “comes together to result in a better experience, fewer surprises and fewer complications.”

Astounding indeed. Every patient should know this option.

As I said: an astounding story, right?

Of course there are no guarantees, and problems do happen, and no two cases are identical … but wouldn’t you want to know about a new option that might have you functioning again five or six times sooner than the usual treatment, with a lot less pain?

I’m going to be blunt here about something I think is important: it’s not uncommon for a newer option like this to not be widely known, and thus not offered to patients. (Last month I spoke at a conference where someone mentioned this type of knee replacement, and said that it’s only used 18% of the time.)

I applaud the surgeons, like Howard, who have taken the steps to learn this surgical method (including the comprehensive package he uses). Honestly, it’s deeply moving to see my wife doing so well – she’s  not out of the woods yet, but doing so well – and I want to help spread the word, so docs who offer this method can be rewarded by eager patients – and perhaps so surgeons who don’t know it yet will be inspired to learn.

Postscript: Seventeen days after her bilateral muscle sparing knee replacements, Ginny played a round of miniature golf with Dave, using no assistive device beyond the requisite putter.