In preparing for this speech, they asked me to be sure to offer takeaways – specific, concrete to-do’s for people to use after the day [...]]]> I’m speaking today at the annual Health Fair for Rich Products employees in Buffalo. They’re proactive about a family attitude, responsibility, and consumer engagement, and that extends to health.

In preparing for this speech, they asked me to be sure to offer takeaways – specific, concrete to-do’s for people to use after the day is complete. Here they are:

The Magic Incantation (introducing yourself as an e-patient):

Here’s what I say when I meet a new clinician, to explain my appetite for understanding:

“I’m the kind of patient
who likes to understand
as much as I can
about my health.”

“Could I ask
some questions?”

Shazam: you’re an e-patient! Empowered, engaged, equipped, enabled.

It’s exactly what I said when I met the dermatologist who removed my skin cancer last week. So after our first meeting, when I did have questions to ask, it was natural.

Five starter questions:

When you or your family encounter a diagnosis, here are some basic questions to use:

1. How can I learn about my condition?
   • Good websites or pamphlets?
2. What are my options?
   • How much does this cost?
   • Are there any other options?
   • Do other doctors offer anything else?
3. What are the risks?
4. How strong is the evidence?
5. Can I connect with other patients?

Don’t worry, these questions aren’t rude! By asking them you’re being a responsible, activated, engaged patient. That’s great, because throughout medicine one of the most widespread complaints is about patients who aren’t engaged.

Remember, e-patients are empowered, engaged, equipped, enabled, educated, sometimes expert … in your travels you’ll take this wherever it takes you. And don’t forget to use your Health Advocate benefit!

November (before biopsy)

As regular readers know, I have a basal cell carcinoma on my jaw line, and since I have $10,000 deductible insurance and have had really bad experiences trying to get a straight answer on costs, I decided [...]]]>

April 24 (11 weeks after the biopsy cut part of it off)

November (before biopsy)

As regular readers know, I have a basal cell carcinoma on my jaw line, and since I have $10,000 deductible insurance and have had really bad experiences trying to get a straight answer on costs, I decided to be very proactive about researching my options. I’ve decided, and the treatment is today.

I’ll have a lot to say later about the process I went through. Long story short, I’ve decided not to buy Mohs surgery, which everyone seems to agree is the Cadillac treatment; its cost to me, out of pocket, would be several thousand dollars, and the treatment I chose will be under $1,000: ED&C – electrodessication and curettage (Wikipedia). (Under local anesthetic they slice off some tissue, zorch it with the electrozorcher, and repeat until they’re satisfied.) (I have a lush technical vocabulary, huh?)

Quick background:

• Time to practice what I preach: I have skin cancer again. (Feb 9)
• I’ve started an RFP for my skin cancer (Feb 11)

Summary of my research: (Much more detail to come in other posts)

• Mohs surgery
  • Recurrence (cancer comes back): 1% of cases
  • 1 stage: $3,000 plus or minus 12%
  • 3 stages of Mohs: $6,800 plus or minus 5%
  • No visible scar. Absolutely the best if you want it invisible e.g. in the middle of your face.

• Excision (just cut it off)
  • Recurrence: 10%
  • $750-$1500
  • Stitches; some visible scar.

• ED&C
  • Recurrence: 7.7%
  • I didn’t get a specific price estimate – it won’t be more than excision, it’s simpler, and its efficacy is better comparable.  (I’ll let you know when I have the actual cost.)
  • No stitches – just a “scrape/burn scar.” (Honestly I have enough “souvenirs” of my teenage acne that this doesn’t bother me in the least.)

The evidence

This is a new doctor for me so I explained my e-patient preferences – I like to understand the options, I ask lots of questions, etc. The office had already been great with me at digging out the cost info I needed. (Every hospital I consulted was helpful, though for all of them it was laborious to dig it out. Hospitals don’t have a job estimating / price quote system!)

At my first visit the dermatologist said, “Well, if you’re basically self-pay and want to keep costs down, there are other options.” He told me about ED&C and I said it sounds good.

L’esprit de l’Escalier strikes

That’s the term for the voice that tells you, on the stairs as you leave, what you should have said back at the party. :-)  (Wikipedia) Amusingly, the day after that visit, I smacked my forehead and realized “I was supposed to ask for the evidence on efficacy!”  So I wrote in on their patient portal, and got this response:

J Dermatol Surg Oncol. 1989 Mar;15(3):315-28. For overall recurrence rates — I don’t know a study off hand that evaluates recurrence rates by location. “Five-year recurrence rates by treatment modality are as follows:

• Mohs micrographic surgery 1.0%
• surgical excision 10.1%
• curettage and electrodesiccation 7.7%
• radiation therapy 8.7%
• cryosurgery 7.5%.”

Also of value:

• Derm Surgery April 2012, 38(4): 585-594. Cost analysis of Mohs surgery
• Dermatol Clin vol 29, 2011, pg 153-160. Overview of Mohs surgery, including a discussion of higher recurrence rates in areas of embryonic tissue planes

The first article was all I needed, personally. If costs were the same I’d go Mohs, but they’re not – not by a long shot.

Addition, noted in a comment below:
As the procedure started today I discussed this post with the doctor, and he pointed out that the relative numbers among the treatments in that study are not apples to apples: there’s selection bias – for worse lesions a doc wouldn’t think of using ED&C, etc – Mohs gets all the nastiest ones and still has only 1% recurrence. So, as he said in our original visit, excision really is comparable to ED&C. (I didn’t ask for more evidence on that; I was satisfied, and again, it’s not like this is brain cancer. Follow-up will be a simple visual inspection from time to time, and again, BCC rarely metastasizes.)

Lots more to say later, but I’ll sum it up this way: it was a lot of work to find out what I needed for an informed decision, but ultimately I’m quite satisfied. I feel like I knew the options and I could choose – not some unseen insurance person that I can’t talk to.

I’m gonna predict that as information tools evolve – so getting this info isn’t such a struggle – more and more people will go high deductible.

And, note: if an insurance company had said “You don’t deserve the best one (Mohs) – you get the quick/cheap ED&C,” it would have felt like the nastiest kind of rationing, but when I make the decision, it feels like freedom.

I guess that’s what they mean when they talk about paternalism (where someone else, supposedly more informed, makes decisions for you because you’re not mature enough) and nannying (where someone else, supposedly well meaning, makes decisions for you because you’re not able or smart enough).

Anyway, it took months and it was hard work, but I really like the result. More later. Bottom line, I’m spending an hour and a few hundred dollars instead of a full day and seven grand.

Okay, time to push the Publish button and go get zorched and scraped!

My buddy Ross Martin MD, an e-patient extraordinaire, member of The Walking Gallery, and song-writer, has updated Alice’s Restaurant in the hopes of starting a movement, as the original did. It’s a fictionalized account of my story. He’s got a sweet voice and astute eyes and ears.

Here’s the post on his songwriting [...]]]>

My buddy Ross Martin MD, an e-patient extraordinaire, member of The Walking Gallery, and song-writer, has updated Alice’s Restaurant in the hopes of starting a movement, as the original did. It’s a fictionalized account of my story. He’s got a sweet voice and astute eyes and ears.

Here’s the post on his songwriting site. On the right side there’s a list of his songs on the ReverbNation site, where the audio lives.

He’s crazy. It starts:

This song is called “e-Patient Dave’s PHR.” It is more or less based on the actual and true story of Dave and his PHR — which is short for “personal health record” — and about how Dave came to be known by the name of e-Patient Dave.

All I want is a PHR
Just like e-Patient Dave
All I want is a PHR
Just like e-Patient Dave
All my information
In the right configuration
So I can choose to share it
Anywhere across the nation
All I want is a PHR
Just like e-Patient Dave

Ross was one of the guys in the garage band that, earlier this year, recorded a version of “Blue Suede Shoes” with the chorus “Gimme My Damn Data.” That post is here.

One for the docta,
Two for th’ nurse -
Y’say you’re try’n to treat me
so don’ make me feel worse
Gimme my damn data… it’s all about me so it’s mine!

Good heavens, Regina Holliday paints murals and jackets with our health stories, and now we have songs about our medical records … should the Journal of Participatory Medicine open an Arts section??

More later. enjoy!

(For the lazy, here’s a direct link to the audio – but I know he’ll love it if you go to his own site so he can count how much we love him!)

Before me there were two great presentations by diabetes / weight-loss wizard Julie Cabinaw (with the [...]]]> Today I participated in a webinar on chronic conditions hosted by eHI, the eHealth Initiative (NationaleHealth.org). I don’t have any expertise on chronic conditions but they asked for my voice regarding the value of patient engagement – e-patients!

Before me there were two great presentations by diabetes / weight-loss wizard Julie Cabinaw (with the amusing but misleading Twitter handle @Loser_Mama) and cardiac patient Dan Treadwell. An archive of the whole event will be posted soon.

(The webcast used a new technology, ReadyTalk, that had a lot of problems, not least of which was that it has no online audio (dial-in only) and it quickly sold out (“All lines are full”) so people could watch the slides but not hear. There will be an archive of the whole thing, but it still won’t include my slides, because I didn’t send them in soon enough – totally my bad. Thus, this post.)

Here are the slides; below are notes on what I said.

Notes on the slides:

Slide 1 & 2: My usual opening about “the most underused resource in healthcare”

Slides 3-6: A new idea I’ll be introducing into my speeches:

Total value of care =

value created by providers (in visits)

+ value created by patients (between visits)

We’re accustomed to looking for improvements on the provider side. That’s understandable – I’m alive because of great value created by providers – but it overlooks the value we can create by putting more power in the home’s hands. That’s what the next slide is about:

How can we optimize the patient & family’s contribution?

Slides 7-8: As I’ve often said, I hate the word “compliance” – it implies that one party knows all and the other (the patient) should obey. My view is, hey, whose life is at stake here??  If it’s my goal, why not call a positive outcome achievement? Plus…

Slide 9 (“.5 x .5 = .25″): It turns out doctors and nurses have just as big a problem with doing what they should (e.g. “complying with” handwashing protocols in hospitals). So it ain’t a patient-specific problem, it’s a human behavior issue – and the 50% x 50% means together we’re only achieving about 1/4 of what we know how to do. So let’s look at what it takes to improve performance.

Slide 10-13: Long ago in another career I learned about Thomas Gilbert (1927-1995), a real guru of performance improvement, and author of Human Competence: Engineering Worthy Performance. Long before the development of Lean, he methodically analyzed what we now call the root causes of failure, and published the matrix shown here.

Healthcare can learn a lot from this. It’s about solving the problem, not casting blame.

Here’s a great post about this matrix, courtesy of new Twitter friend Peter Eggenberger (LinkedIn) of Michigan’s REC.

Slides 14-18: My personal view of the most common causes of a performance failure, from studying Gilbert’s work long ago. Every one of these can be found as causes of failure, both by providers and patients. (Think about it.)

Slides 19-20: So the question is, can we make it easy to do the right thing? (This is an example I noticed while out getting some exercise last month.)

Slides 21-22: GlowCaps, an example I often cite. Note: in no other industry do we view a hard-to-do task as being the customer’s fault – the winning vendor makes it easier to do. This shows up in such basic things as automatic transmissions and anti-lock brakes. But in healthcare we blame it on the patient. Well, Glowcaps will beep when it’s time to take your pills, or even call your cell phone. And miraculously, “compliance” by those dodgy ol’ patients transforms from 50% to 99%.

See how silly it is to view all failures as the patient’s fault (healthcare), or the worker’s fault (Gilbert)? It’s just not a useful view.

And that, ladies & gents, is a great example of how eHealth can be applied to every cell of Gilbert’s matrix.

Slide 23: My list of general causes of failure, again, with the spotlight on the one that GlowCaps addresses: “Does the person know when it’s time to do it?”

Note: from fixing that one cause, a whole cascade of benefits flows forth from the better tool – not only the immediate benefit of taking the medication, but avoidance of all the sequellae (consequences) of not taking the med.

Slides 24-26: Conclusion.

]]> http://epatientdave.com/2012/04/25/slides-for-ehi-webinar-on-chronic-conditions/feed/ 5 http://epatientdave.com/2012/04/20/busting-my-buttons-my-daughter-and-the-boston-marathon/ http://epatientdave.com/2012/04/20/busting-my-buttons-my-daughter-and-the-boston-marathon/#comments Fri, 20 Apr 2012 12:01:16 +0000 e-Patient Dave http://epatientdave.com/?p=3833 Permit me to indulge in excessive joy. On Monday my daughter Lindsey ran and finished the Boston Marathon. Woot.

It was, as they say in Boston, “wicked hot.” 87 degrees, which is about 25 degrees hotter than marathoners like it. So hot that the Marathon allowed people to defer their cherished credentials, to run [...]]]> Permit me to indulge in excessive joy. On Monday my daughter Lindsey ran and finished the Boston Marathon. Woot.

It was, as they say in Boston, “wicked hot.” 87 degrees, which is about 25 degrees hotter than marathoners like it. So hot that the Marathon allowed people to defer their cherished credentials, to run in 2013 instead; 4,000 took the offer.  So hot that 2,000 people started but didn’t finish. Including both of last year’s winners, men’s and women’s: they started and dropped out before the famous Heartbreak Hill.

She researched. She blogged about the course, her research, and the data on the last hot marathon, 2004. She prepared. And she nailed it. Her first Boston Marathon (only her second marathon ever), and she finished smack in the middle of the pack.

“They say you’re supposed to do it as just a 20 mile run, followed by a 10k race” (10k= the last 6.2 miles), she says. Yeah, except the “10k race” part (at mile 20) starts at Heartbreak Hill. See that big bump on the right side of this elevation map? Yeah, that’s an 88′ climb (27m), like running up a nine story building… after your 20 mile run:

In the Boston Globe an experienced runner said usually when you get to the top of Heartbreak Hill you’re greeted with a cool breeze to carry you to the finish, but this day “The breeze was hot, the water was hot, everything was hot.”

Mind you, it wasn’t a joy; that night she said “I’m never running that course again.” But later I ran into an experienced marathoner at an ice cream place, who apologized for how bad it was that day. Lindsey said that made her feel better :-), and after a good night’s sleep when she read how bad the day was, she realized it was an accomplishment.

Yeah it is.

At a time like this a daddy’s mind goes back to those years of cross country at Salem High, waiting by the course for her to emerge from the woods, yelling “Go Lindsey! You can do it!”

Yeah, you can. You rock.

A friend writes:

Dear Dave,

A friend of mine has [...]]]> Addition 4/26: Late in the comments, it turns out this was a wrong diagnosis, but the nature and quality of the discussion isn’t affected by that. Take a look at the issues that came up in my initial research and in the comments. Fascinating!

A friend writes:

Dear Dave,

A friend of mine has to decide if to do a spinal stenosis surgery.

Is there a solid resource to research if that’s a worthwhile option?

Any help, anyone?

Below is the result of a half hour of generic searching. I’d really like to supplement it with advice from other patients and clinicians.
__________

As generic starting info of the “Web 1.0″ variety (“read-only” encyclopedias), here are the usual candidates:

• Mayo Clinic
  • Introduction: http://www.mayoclinic.com/health/spinal-stenosis/DS00515
  • Education with graphics and “expert answers” http://www.mayoclinic.com/health/medical/IM04362
  • Treatment options Mayo offers http://www.mayoclinic.org/spinal-stenosis/treatment.html I notice that they only suggest surgery if other things have failed.
• Cleveland Clinic
  • Education article (no illustrations that I can see)
  • Understanding spinal stenosis – transcript of an online chat they hosted
  • “When Getting Up Gets You Down” – layman-friendly newsletter article (PDF). Interesting excerpts:
    • Surgery has “80 percent chance of marked improvement in the ability to walk and stand.” (Note – that means a 20% chance of no improvement or only a little improvement.)
    • “such surgeries are typically performed only on patients who have advanced spinal stenosis.”
    • Be aware, “the telltale sign—the persistent pain when walking—is also among the common signs of advanced cardiovascular disease.”
  • Interesting: see their second opinion link, which provides an online way to get a second opinion from home. (I’m just passing along the link – haven’t tried it.)
• Kaiser Permanente: I love that their site’s top search results are from the patient’s point of view -
  • Deciding about surgery for spinal stenosis
  • “Spinal stenosis: should I have surgery?” Look at how clearly written this is!  And it’s interactive, so it’s not “Web 1.0″ – it uses Web 2.0 technology to improve your experience and, with its self-test, to help you solidify your learning.
• Medscape is often useful, but not so much, in this case-
  • Their article about the condition is pretty technical
  • Their “patient education” link is irritatingly uninformative about treatment options – it only covers what patients are supposed to do (posture, home exercise etc). Very old-school.

Any other references?  Any patient communities?

_________

The ultimate generic advice is to ask the surgeon these essential questions:

• What is the success profile – percent who get total relief of symptoms, percent who are mostly relieved, partially, no relief?
• How long does recovery take? (The Cleveland Clinic site says 6-12 months.)
• How many cases have you done? Has this hospital done?
  • Don’t be shy about asking this!  Any good doctor will be happy to answer.  I just read an article by a physician who, as he was about to undergo laser throat surgery, realized that the machine was brand new and the doctor had never done the surgery.

And, as always, remember that any hospitalization and surgery carries a significant risk of medical error and hospital acquired infection, so it’s prudent to have an advocate / friend / family with you as much of the time as possible. Any hospital that doesn’t allow this should be avoided.

Today would have been my dad’s 90th birthday: he was born March 27, 1922. Here’s a picture in his later years.

Dad died in 2005. He lived a full life, for better or worse, from aircraft mechanic in World War II to microfilm salesman to vice president of a division at [...]]]>

Today would have been my dad’s 90th birthday: he was born March 27, 1922. Here’s a picture in his later years.

Dad died in 2005. He lived a full life, for better or worse, from aircraft mechanic in World War II to microfilm salesman to vice president of a division at 3M. He loved his hobbies, puttering in garage or basement – when I was a kid he had classic and antique cars, but dagnabbit he got rid of them before I got my license. (I wonder why?) Then it was boats – he’d learned to sail on Long Island Sound, and taught us on the Chesapeake near Mount Vernon, then on Minnesota lakes, a houseboat on the St. Croix, and then sailing and rowing in Maryland, off the Cheseapeake near Annapolis.

I miss him.

In my college years, and after, I was the ever-rebellious anti-establishment type; he was the ever-positive Dale Carnegie “positive thinking” salesman. Sometimes when I railed against something, he’d ask: “What do you want? What change are you looking for?” (He strongly favored non-noisy / non-polluting forms of boating, but instead of attacking, he promoted his positive alternative: the “Société Nauticale de Propulsion Humaine,” with its faux French title and fake Latin motto on the button at left.)

I’d roll my adolescent eyes, but today his words live in the back of my mind, and sometimes come out of my mouth.

In his final years he was hard to care for. I watched from afar (New England then Minnesota) while my mom and siblings refurbed the house and did all the things one does for an elder in decline. Eventually he moved into a local facility, where I got my first exposure to how erratic that care can be: his oxygen cannula unattended, blowing onto his cheek, or the hose unplugged, or other kinds of sloppiness.

Two years ago, while writing my book and recalling my own near-death, I thought back to the last time I saw him, shortly before he passed. On my old blog I wrote about it, and a song that ripped my heart out in a constructive, cathartic way. I wrote:

…that brought me back to my own father’s death in 2005, when I lived a thousand miles away. Traveling to see him wasn’t easy. The last time I left him in the care facility I said I’d be back soon and kissed his forehead. His last words to me were “That will be nice.” All signs were that the end was near, and it was.

That night I attended the annual concert of my sister Amy’s excellent Sweet Adelines chorus The Pride of Baltimore. The headline act was Wheelhouse, a champion quartet whose signature song is “When I Leave the World Behind.” Irving Berlin’s beautiful lyrics flooded me; I sat there with tears running down my face, thinking of my dad’s departure from this world.

A YouTube of Wheelhouse, and the lyrics, are on that post.

And here’s a DVD the family made for his memorial service, from scrapbooks and photo albums. The music is “Kairos,” composed and performed by my singer sister Suede.