e-Patient Dave

January 16, 2012 By e-Patient Dave 15 Comments

e-Patient Resources for Parkinson’s Disease

I’ll add this to my list of patient communities. This is an important project – we need to build, somewhere, a publicly available community list that patients everywhere around the world can access. Some sites on my community page are starting, but we have a long way to go.

Here’s an example of why – a true story from tonight’s email.

Tonight a friend emailed me, grumbling about the utterly useless responses a relative had received, trying to find out the latest thinking about the beneficial effects of bicycling for Parkinson’s patients. He’d even contacted one of the biggest-name hospital/clinics in the world, intentionally doing the e-patient “best practice” of seeking the best authority, and had only gotten links to useless news clips:

This is really interesting (snarl). My brother has what I would call early PD. A bad and recalcitrant tremor is his main problem. He is a lifelong athlete – marathons and triathlons. He is HIGHLY self educated in the research on PD. His question is: is the ‘forced’ aspect of the bike pedaling a critical factor in achieving the result? The reason is that 90 rpm is not ‘forced’ for him – it’s easy. But faster than 90 rpm and he bounces off the seat.

He has not been able to get an answer even from researchers. There may not be one yet, but here is Cleveland Clinic’s disappointing response – send him 2 news videos with utterly superficial treatment of the subject!!

Blew my mind. We have a long way to go, Dave.

———- Forwarded message ———-
From:
Date:
Subject: Biking PD study
To:

I asked the Cleveland Clinic if the pedaling had to be “forced” to have benefits. I got a canned response to look at these two videos. I did not find the answer after viewing them–did I miss something? Looks like immediate results that remain for days/weeks. Wadda ya think?

http://www.msnbc.msn.com/id/3032619/vp/26510952#26510952
ABC Good Morning America story with Dr. Jay Alberts

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January 14, 2012 By e-Patient Dave 1 Comment

Clinician focus group for e-Patient Boot Camp

The P² Collaborative of Western New York is one of the communities of the Robert Wood Johnson “Aligning Forces for Quality” project. (I just realized I’ve never written about this excellent project! Must fix. They’re smart, methodical, data-driven and effective. There are 16 communities in the Aligning Forces project, and P² is one.)

The P² people are just brilliant – they’ve taken my e-Patient Boot Camp idea, intended for industry, and are breaking it down into packages for consumer/patients and for clinicians. Here are some links from today’s session with clinicians:

YouTube link to record your own YouTubes from your webcam – no uploading needed http://www.youtube.com/my_webcam
“From God to Guide” excellent TEDx talk – Parkinson’s doc & his actual patient
www.Doximity.com – doctor social media community – half a million docs in 87 specialties
- www.orthomind.com for orthopedics (Thanks to @HJLuks for both these)
- CardioExchange.org for cardiologists (@MarilynMann)
HIPAA flyer including Seinfeld clip about Elaine trying to get her record, and being labeled “difficult” https://www.epatientdave.com/2010/04/23/elaine-and-kramer-play-gimme-my-damn-data/

January 9, 2012 By e-Patient Dave 32 Comments

Let Patients Help, Cost-Cutting Edition, part 2: Shingles vaccine

Corrections added Jan 10 as noted. See sections marked “Update 1/10”. See also my comment tonight on today’s disgusting experience of trying to sort this out, and our ultimate rescue.

Two months ago I posted 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. …

In that case I tried to fathom a so-called “Explanation” of Benefits, which was in fact unfathomable. (The FTC forced cigarette makers to be truthful in labeling; can’t they force insurers to stop using “explanation” on something nobody understands?)

This time my wife and I are shopping for vaccines. Specifically, shingles. And trying to be a responsible consumer turned out not to be easy.

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January 8, 2012 By e-Patient Dave 1 Comment

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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January 3, 2012 By e-Patient Dave 3 Comments

“There’s something in your lung”: five years ago today

This is a re-post with new URL – for some reason the original of this post failed.

Precisely at 9:00 a.m., five years ago today, the phone rang and my life changed.

There were two calls, actually, from two physicians. I don’t recall which was first, but one was Dr. Danny Sands (my primary), and the other was orthopedist Dr. Jeffrey Zilberfarb. Five days earlier I’d seen Dr. Sands for a physical; in my pre-visit agenda email (PDF at right), I’d noted “Shoulder: range of motion complaint,” and that as we’d discussed earlier, I had made an appointment to see Dr. Z on January 2. That visit had been cordial, unremarkable; he’d x-rayed my shoulder.

But in the x-ray Dr. Zilberfarb saw something unexpected, and he’d contacted Dr. Sands. Dr. Sands called me and said, “… I pulled up the x-ray on my screen. Your shoulder will be fine – it’s just a rotator cuff problem. But Dave – there’s something in your lung.” (See lower image.)

He said we didn’t know what it was – could be a fungal thing, could be a scar left over from some old infection – but “we need to find out.” I said, “So, you need me to get back in there?” He said yes.

Imagine hearing “There’s something in your lung” when you don’t feel sick – something significant enough that your doctor calls you at 9 a.m. You immediately start thinking about that spot, looking for any sensation, any sign of trouble. You start wondering, “Do I have a time bomb inside me??” And that’s not a nice feeling to have, when your doctor’s on the phone.

He said he’d called radiology and ordered a CT. In parting I asked, “In the meantime, is there anything I can do?” And Dr. Sands replied: “…Just go home and have a glass of wine with your wife.”

And that is a sobering thing to hear from your physician.
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January 1, 2012 By e-Patient Dave 3 Comments

Looking back, looking ahead, part 1: early speeches

Janus looking backward and forward, from Wikipedia — Image: Wikipedia

Well, it’s January, Janus time – the Roman god of beginnings and transitions. He looks back, he looks ahead… he’s amazing!

Soon I’ll post about 2011 and 2012. But first: while putzing with my website today I revisited some way back content, which sets the stage even better for looking ahead. So, a quickie to start the year:

Video oldies – three short talks from the start of my public speaking about healthcare.

I just found video of the first talk I ever gave (18:03) at a healthcare business conference – e-Patient Connections, Oct. 2009. It’s amazing to go back there and see what we were looking ahead to, back then.
- The Society for Participatory Medicine had just been formed, and its journal had just launched its introductory essays.
- Two years later, two dozen e-patients were brought together at the event to create an e-Patient Bill of Rights.
Six weeks later, December 2009, was this Quantified Self talk (14:43) at Wired headquarters in San Francisco.
- I loved relating with the tech geeks at QS; it was the first time I dared show the spreadsheet where I’d tracked my tumor sizes.
- btw, socializing after this event I asked Matthew Holt of Health 2.0 for a bit of start-up advice. He never gave me a penny, of course :-), but his advice worked out.
Three months later, March 2010, was this impromptu 10 minute interview with the then-enigmatic Dr. Anonymous. (He’s since uncloaked himself: Dr. Mike Sevilla at Family Medicine Rocks.)