e-Patient Dave

March 25, 2012 By e-Patient Dave 20 Comments

Let Patients Help, Cost-Cutting Edition, Part 3: Shopping for my next CT scan

Since November I’ve been blogging about what happens when a patient tries to help control costs, in my cost cutting edition posts. Most recently I noted that this stuff takes time, especially since our glorious American healthcare system seems to be set up to block our access to what things actually cost … or at very best, we have no channels and pathways to let us find the information.

Well, ladies and gents, I’m fed up. I have to get on with life. I’ve been trying to be a responsible, engaged patient, and if the established channels won’t make it easy for me to find out what I need to protect myself, I will blow the whistle, announce what I’ve found so far, and move on. And we’ll take it from there.

I’m leaving tomorrow for 11 days of work in more sane countries – Switzerland and Holland – so I’m going to report the status here.

A caution and apology at the outset: I expect this will be read by some of the people I’ve spoken to at these companies. A lot of the frustrations I express here are because we couldn’t connect. I am grateful for your effort; you’re just too hard to reach, which is a problem if you’re the only one at your company who can help with this kind of work. I will appreciate your continued effort as we work through this change in American healthcare.:)

Later I’ll blog about the results of my research into my basal cell carcinoma. But for today, let’s just look at the simple (you would think) matter of getting an important CT scan.

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March 18, 2012 By e-Patient Dave Leave a Comment

New video: “Patient as Active Partner? Seriously?”

Temporary note:

I’ve been asked to withdraw this post for now – it linked to videos of other speakers as well as me, not all of whom have given their permission yet.

Back soon, I hope.

March 10, 2012 By e-Patient Dave 5 Comments

Gimme My DaM Data: The Deloitte health IT guys rock out

Well.

I haz been busy this week, so only tonight did I get around to absorbing this project that my buddy Ross Martin has had in the works for a while.

Remember the “e-Patient Rap” in my “Let Patients Help” talk from TEDx Maastricht? Lyrics by Keith Boone:

I wanna be a e-patient
just like Dave
Gimme My Damn Data!
‘Cause it’s MY life to save!

Well, Ross wrote a decidedly non rap riff, set to “Blue Suede Shoes.” He first introduced it (karaoke) at the big HIMSS health IT convention a couple weeks ago, but then he got together in someone’s garage with fellow Deloitters Harry Greenspun and Chris Brancato, with Harry’s son Ben on lead guitar and drums. (Awesome break, Ben!) Dig it:

Better yet, it’s participatory and crowdsourced: they’re collecting clips of you doing a phrase (or more), for the final video! See instructions here.

Lyrics:

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March 7, 2012 By e-Patient Dave 1 Comment

Links for e-Patient Boot Camp #003 (Florida Health Care Coalition)

Here are links to content discussed in the e-Patient Boot Camp Monday, and my keynote and session Tuesday. Thanks to the Florida Health Care Coalition’s board for supporting the boot camp – I look forward to following up with participants!

Society for Participatory Medicine, its journal, its blog e-patients.net
National Business Group on Health’s Finding trustworthy health information on the internet
My viral TEDx video “Let Patients Help” (including “the e-Patient Rap” written by Keith Boone)
RA Warrior – Kelly Young’s RA patient community
ACOR – great example of a patient community
CaringBridge – create your own support “blog” without being a blogger
e-Patients White Paper – check the Seven Preliminary Conclusions – in Chapter 2
Ferguson Report – e-Patients as Medical Researchers
Health Leaders media & magazine
Peer-to-Peer Healthcare Pew Internet – Independent Research
Seattle Mama Doc – Wendy Sue Swenson
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February 29, 2012 By e-Patient Dave Leave a Comment

Two big announcements: Boot Camp #003: Orlando (Monday!) and another TEDx

The good news is, big stuff is happening. Lots of it. The bad news is, boy is it busy around here. Driving me nuts. :-)

In normal times each of these would get a separate post, but these are not normal times, so:
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e-Patient Boot Camp #003 – Orlando, March 5, with Kelly Young!

Yes, that’s NEXT MONDAY. Special Guest: “R A Warrior” Kelly Young! If you’ve seen my TEDx talk “Let Patients Help,” you’ll recall Kelly, who viewed her scan CDs (and whose doctor fired her). She will present her case at this special edition.

Boot Camp #003 is being sponsored and produced by the Florida Health Care Coalition, as a pre-conference – at no extra cost – attached to their Tuesday-Wednesday event “Healthcare (R)evolution: Best Practices in Patient Engagement.” FHCC is a coalition of self-insured employers; regular readers will know I’ve been saying this is the segment that most wants to produce results now, not just talk about engaging patients.

Registration for the (R)evolution is open to the public. It’s just $150, and includes the boot camp, which by itself would be $500, were it not for FHCC’s sponsorship. Speakers at the (R)evolution (not the boot camp) include my buddy Lee Aase, the guru of the Mayo Clinic Center for Social Media. Both Kelly and I are on the Center’s advisory board.

Brochure here (PDF, 900k)
Register here

And if that’s not enough fun, how about this –

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TEDx O’Porto, April 28

Cancer patient Manuel Fortaz has organized this special event, in the Portuguese city of O’Porto. The theme is “From the Heart, Guts,” and Manuel embodies it – he’s producing this while actively involved in fighting his cancer.

I don’t yet know what I’ll talk about – heck, at TEDx Maastricht I didn’t know what I’d be saying until lunchtime that day. It will surely be about the role of patients!

TEDx O’Porto is open to applications to attend. Apply here. The price is just € 75.

(And yes, I’ll also be attending TEDx Maastricht again on April 2, but not as a speaker.)

February 28, 2012 By e-Patient Dave 4 Comments

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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