This was originally posted on my own site. Social media response has said the examples of dialog help people envision how they can express things with their providers.
There’s a new ending, at bottom.
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
My primary, Dr. Sands, had asked for a copy of my visit notes so he could incorporate them in his system. I asked the front desk, and they insisted that I sign a HIPAA release form. Privately I rolled my eyes; a HIPAA release is my permission for them to give my data to someone else – not to myself. But this one’s not a fight worth fighting; at least they didn’t resist giving it to me, as some practices do. Yay.
Expression of e-Patient #2: scheduling that works
I call in to schedule the two tests and visit. They say the first date available is May.(!!) I say “If I’m progressing toward glaucoma, I really don’t want to wait three months for the next update.” Some dialog reveals the staff person’s sense that I’m supposed to have both tests and see the doc on the same day, perhaps to avoid multiple trips. But I live 5 minutes away and work at home.
Eventually I ask to speak to a manager. This guy’s sharp and quick; a few questions, and it turns out I can do them separately. Yay: by expressing my needs effectively, we break through the non-existent requirement and I get what I need.
Expression of e-Patient #3: expecting appropriate information
The drops burn the hell out of my eye – redness, itching, swelling. On the second day I say “Enough!” and call to get them changed. I come in, and the doc asks why I want to change, and I cite the burning. She says, “Yes, they do that for the first week.”
What???
Me, approximately: “Was I supposed to know that? … Was there some patient education flyer I was supposed to get, to tell me what to expect? Is there anything I was supposed to do if that happened?”
Her: silence; the look on her face politely suggests “What’s your problem?” And she doesn’t answer, just looks away.
Me, explaining e-patient: “I’m the kind of patient who likes to know what’s going on – I like to understand as much as I can.” She smiles, nods, chuckles a little and orders (online) another prescription. We briefly note my upcoming tests and I leave.
This one’s a $45 co-pay. “Nice of her to warn me,” I think to myself. It’s still not pleasant, but it doesn’t hurt. The eyes itch, but I’m also getting over a cold. I’m careful not to rub the eyeball itself; I have much experience over the years at safely getting grit out of my eyes, lifting the eyelid the right way, etc.
I go off to the HIMSS conference in Las Vegas – an eight day trip.
Expression of e-Patient #4: finding a doctor who’s a good match for my style
Two days ago (Sunday night) it got bad: I got really tormented, could not make it stop being uncomfortable. By bedtime I asked my wife to look. (Veterinarians make a lot less than MDs, but that’s because (he said ironically) they handle all specialties for multiple species :-), so she has plenty of experience at examining mammal eyes that have things in them.)
She sees that I now have a raised lesion on the white of the problem eye, which (with some difficulty) I can see in the mirror. She rinses it with copious amounts of saline solution, which we’d bought the day before. I keep the eye closed and sleep well. In the morning, bang, immediately I call Nashua Eye and ask to see a doc stat.
Happily for me, this time I get someone different: Dr. Riddle. This is my kinda doc: fast, thorough, steady patter of information as he examines my eye, while the tech Holly enters what he’s saying into their EMR. (Which, btw, got upgraded over the weekend and is Not Working At All Well.)
Riddle is my kinda guy. A dye test (which Ginny suspected he’d do) says the eyeball is not scratched (good). He says the lesion is in fact a reaction to the first drops I had, even though I’d only used them two days, two weeks ago; it’s gotten irritated. Twice he asks whether my eyes were examined when I first returned with the burning, as he’d just examined them; no, I say, twice: she just gave me the other prescription. Hm.
He also notes twice that the visit wasn’t recorded in the EMR – they found the new script recorded as a progress note appended to the previous visit. I guess if there was no exam, that might be reasonable, but I don’t know the protocol in their practice.
He also says that whether to treat my level of pressure (25 & 26) [deleted 3/1/12 – see note at bottom] is up for debate; some docs do, but treatment always has costs & risks, so he wouldn’t. But considering my reaction to the drops, he suggests ditching the existing drops and just giving me something to treat the irritation.
To him, too, I describe my preference for information and engagement. He’s receptive enough that I progress to describing SPM.
Expression of e-Patient #5: communicating my concerns
I’m asking the practice to change me to be Dr. Riddle’s patient. My remaining test is Thursday, and I’ll see him again. Then I need to let the first doctor know what didn’t work for me, and let the practice manager know.
p.s. Crap, now I gotta get (paper) copies of all those records for Dr. Sands…. boy will I be glad when we have health information exchange, and nifty new software that pulls it all together so this isn’t such a chore! Thanks to the regulators at HHS who are finally carving out the stones that will make that a reality – a few years from now. And thanks to the innovators who will tie it all together – get to work, you guys! How are we supposed to be responsible engaged patients if this is so much work, for us and for the providers??
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March 1 update
Today I had my final test (which had been proposed for May) and follow-up with Dr. Riddle. Short summary:
- Today’s pressure test was 15 and 13; my previous one as 17 and 15. It’s puzzling that four tests December-January tests all showed the left eye at 22+, but he said it happens.
- Today’s OCT test (evaluating the thickness of the nerve layer) was fine.
- He said there’s wide wide variation in how people practice, and he’s at the conservative end.
Dave, a great case study on the everyday life of an epatient. Thanks for sharing. One thing I would add/highlight in your helpful breakdown of this experience is the significant help you received outside of the formal health system. I.e., Ginny. She gets placed under the category of finding a style match, but I think she (and the role she plays) really deserves its own category.
If I had to give it an “e” naming convention, perhaps it would be espoused (not necessarily in the marital sense, although you are lucky enough to have that, too!) or embraced… Something to signify the support that we all need to reinforce our own hunches and experience, and to have our backs when we ask for a more patient-centered experience.
Like you, I’m married to a doc. And I know how much I lean on her for medical translation and a general calming effect. But expertise of a clinical nature is more of a handy rather than necessary component; mostly it’s the fact that we know we have support from somewhere.
Bottom line: Part of reengineering the healthcare system is finding ways to acknowledge and incorporate the vast majority of health that happens outside of it.
Hey Jodi –
Yeah, I’m mulling a whole new view of where value is, in the medical universe, including the many places people (like you and me) find what we need – “the care between the care,” as it’s sometimes called. And increasingly I see that our old paradigm is bankrupt – the paradigm that says medical advice should only be taken from our medical professionals. If our clinicians were always available when we need the advice it would be one thing, but every time I hear about a two week wait for an appointment it makes me puke – and I hear the odd sound of an industry pounding nails into its own coffin.
The question for consumers of any sort is always “How can I find what I need, and how can I get it?” Increasingly in medicine “the establishment” simply isn’t available to us when we need it, so of course when we don’t feel like waiting we go somewhere else.
I’ve just finished Eric Topol’s new book The Creative Destruction of Medicine, and as I tweeted, it’s a must-read for forward thinkers, and very bad news for the establishment. In my talk at the Mayo/Ragan Social Media Summit last fall I found myself saying that medicine is coming apart at the seams, with its many different values no longer bundled together – some parts are now available outside the channels of 20-30 years ago. And as those pieces come apart, and recombine in new ways, it’s pretty much what Topol means by creative destruction.
I’m being careful, though, not to restrict my thinking to US healthcare. At a dinner in Spain last summer someone introduced me to @Doctor_Casado, who tweets to his patients when he’s running late so they can reschedule for the next day. “The next day??” I asked. “Isn’t that schedule already filled?” The mutual disbelief continued until he figured it out, and said: “Oh – in Spain we have enough doctors.” Getting seen isn’t a problem, apparently.
The deep question underlying my re-mapping effort is, what are the different things people need, where do they exist, and how can we connect them – help people find them and provide channels for getting them?