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!

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.

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.

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This started out as quick and simple, but there turned out to be more to chew on than I expected.

There’s nothing here that will be a surprise to any experienced patient advocate, but it may be useful to newbies. (If you’re not familiar with our movement, e-patients are Empowered, Engaged in their care, Equipped, Enabled… pick your e. We and our clinicians have a Society for Participatory Medicine, about patient-provider partnerships.)
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I noted two weeks ago that when I got a prescription for new glasses, the optometrist (eye measurement guy) said his eye-puff-tester found high pressure in one eye. Re-tests said yeah, I have high intraocular pressure, which can be a precursor to glaucoma, which can cause blindness.  Good example of a simple routine screening test finding something before it becomes a problem. Rx: go to the ophthalmologist (eye doctor, as in MD).

(The high pressure is often caused by failure to drain the fluid (aqueous humor) that’s constantly flowing into the eye… pressure builds up, and can damage the optic nerve, generally starting at the edges – the blindness often starts as a loss of peripheral vision.)

Well, I don’t really have an eye doctor, but the only shop in town (literally) is Nashua Eye Associates, so I called them. I got hooked up with a doctor, who did an exam with a fancier machine and said yeah, I have high pressure in both eyes. But my optic nerve looks  fine, and so does the “optical angle,” where the fluid drains. So, no problem yet.

She prescribes eye drops to promote drainage. $9 co-pay. We discuss the two additional tests I need, after which she’ll see me again.

Now:

Expression of e-Patient #1: gimme my data
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On my first post about my BCC (basal cell carcinoma), seeking patient communities and other information, I was pleased that people submitted four communities.  I posted them to my very informal patient communities page:

• Basal cell carcinoma
  • EmpowHER basal cell community
  • PatientsLikeMe basal cell skin cancer
• Generic skin cancer
  • American Cancer Society: http://csn.cancer.org/forum/145
  • Inspire.com: http://www.inspire.com/groups/skin-cancer/

Tonight (Feb 20) I’m exploring them for the first time.  I didn’t find any useful information yet, so you may want to come back another day.:)

• If you know of other communities, please submit the URL in a comment below.

This won’t be of interest to most people – it’s mostly for people who want to study what a site should be, and the process of exploring.

Preface – my purpose and context

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