e-Patient Dave

Power to the Patient!

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An e-Patient Goes to the Eye Doctor – and, ahem, expresses himself

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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It turns out being an engaged patient/consumer takes time.

Boy, is this interesting.  Five years ago when I found out I was dying, I quickly dropped everything. I quoted Samuel Johnson:

“Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.”

My median survival of 24 weeks was more than a fortnight (two weeks), but it sure focused my mind: I quickly joined the patient community on  ACOR, paid close attention, and acted quickly.

This time, mere skin cancer is not doing the job. I got a lot of good feedback to my RFP, and I want to process it, arrive at a plan and get it in gear, but I haven’t done a single thing with it yet. This post is a start.

Approach:

  • I have a lot of travel coming up, and that needs to mesh in with my providers’ plans, complicating things further. So:
    • Just as I dropped my participation in South By Southwest, I’m cancelling many other plans this week. It means I won’t be able to meet up with everyone I’d like to, but I’m already not getting enough sleep.
    • I just posted an out-of-office email message saying that except for current customers, I’ll be ignoring email.
  • I’m going to start blogging smaller chunks as I gather them … I have a tendency to want to write BIPs (Big Important Posts), and that’s not working.

First reports:

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I’m singing again – for the first time in years!

In the past couple of years I’ve gotten used to being on stage, but this July I’ll be doing it in a different way: for the first time in three years, I’ll be on stage singing, with my buddies in a choral competition: the World Choir Games, in Cincinnati.

So tonight, for the first time in three years, I stood on the risers and sang.

Longtime readers know singing used to be a big part of my life. I sang in school and college, and ten years ago I joined the Nashua Granite Statesmen, a men’s barbershop chorus. (Lots of people have heard of barbershop quartets, but not many know we do it in choruses too!)

For years they (we!) were the perennial New England champion and would go to international competitions. I’m no soloist but because of this great group I got to compete at internationals in Montreal, Indianapolis and Nashville.

At my diagnosis, five years ago this month, I asked Dr. Sands if I should stop singing to conserve energy, and he told me no – it’s not good to drop life activities that you love. (It seems I’d, um, talked about it a bit…)

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Thank you and fare well, Cheryl Paradiso

Cheryl Paradiso picture

This is a bittersweet but truly wonderful announcement. After a year-plus as my very-part-time assistant, Cheryl Paradiso has gotten a great full-time job! She starts Monday, November 28.

I really should have posted this in advance, but, well, I’ve been busy.

And that’s due in no small part to how Cheryl has helped implement the systems I now use today. I did most of the picking (because I’m picky), she didn’t know any of them, and she learned them all to the point of managing the business:
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Let Patients Help, Cost-Cutting Edition, part 1: a bill.

I often hear about how patients are a major part of the cost problem – their “non-compliance,” their wanting everything they can get, wanting it for free, etc.  So, let’s see what happens when a patient who wants to help cut costs gives it a try.

So-called "explanation" of benefits for 10-3-2011
Click to enlarge

I was recently scheduled for a semi-annual test, four years after my treatment ended. I thought, “Hm, could I save costs by getting it somewhere else? Perhaps even find a place with higher quality? Get more for less? That’s what consumers like to do.” It turns out that information isn’t readily available. Next time I’ll hunt, but this was in the middle of my busy travel season.

Anyway, the bill just showed up. Actually it’s not a bill (“THIS IS NOT A BILL”), it’s an “explanation” of benefits. But take a good look at it, folks, and see if this “explanation” helps you answer any of these questions:

  • What was done to me?
  • Which line items were mistakenly overcharged, if any?
  • Which items were listed (and billed) without having actually been done? (That would be insurance fraud.)  The insurance company wasn’t there, so I’m in a much better position to audit.
  • All in all, did I get a good deal, for my $1,736 out-of-pocket co-pay?  And did my insurance company get a good deal?  Because when my $10,000 deductible is used up this year, they start paying.

You’d think they’d want to be auditing this stuff. I’ll call ’em Monday, and see what they have to say. (I wonder if they have the information on which providers have the best costs and quality. That would help both of us.)

The accuracy question isn’t just academic; in 2009 I blogged at some length about significant errors in my billing records, such as conditions I never had. I’ll be glad to help reduce costs, and clean up my medical record, if the information is taken out from under the blankets.

Any more of you lazy consumers out there wanna sign a pledge to do the same?

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The business of patient engagement: travel tools

The other day I recalled Ted Eytan’s old series My Own CIO, from the days when he cobbled together the tools he needed. That was my first clue that in today’s world, an individual can compete with the big boys … or at least not be constrained by lack of power tools.

I hope to continue in that spirit here, adding posts as Ted did, in the hope that others – especially other e-patient speakers – can benefit as I did.

Tripit statistics Oct 22 2011
Summary statistics from my Tripit profile

Travel: a logistical nightmare

The other day I noted that evangelism requires taking it to the field, and my schedule page reflects that. This is complicated – a lot – by the reality that a peak conference season often requires traveling from one event to another, coordinating plans between different travel agents, which makes it hard to pick the right flight in advance, and often involves added costs later when plans change (ugh).

Here are the tools I use all the time.

  • Selecting flights and hotels: Kayak.com and Southwest.com.
    • Kayak is absolutely awesome in the flexibility it gives you for departure and arrival times, length of layover, alternate airports, etc etc.
    • Kayak also lets you specify which airlines, or what flight network you want. Mine is StarAlliance (United, USAirways, etc).
      • Southwest doesn’t participate in consolidators like Tripit and Travelocity, but they’re my favorite alternative to StarAlliance: their standardized planes mean they have no crappy seats, no cramped mini-planes, and they have a hub at my closest airport, Manchester NH (MHT).
    • Kayak support is awesome. The guy who runs it writes promptly and intelligently!
    • Note that Kayak itself doesn’t sell the tickets – you buy from whatever website sent Kayak the quote. Fine with me – that means Kayak doesn’t need a redundant customer service staff.

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