e-Patient Dave

November 27, 2011 By e-Patient Dave 5 Comments

In memoriam: Monique Doyle Spencer

Monique Doyle Spencer signing books from Levy blog — Photo from Paul Levy's blog, 11-27-2011

Last night a dear and inspiring friend breathed her last.

Monique Doyle Spencer, metastatic breast cancer patient, died at home as she wished. Please see the post today by our mutual friend, Paul Levy, who sponsored the publication of her book when no publisher would.

All knew the end was near. A couple of weeks ago she happily attended her daughter’s wedding; she had a good Thanksgiving, Paul says, then went rapidly downhill.

Monique’s book is The Courage Muscle: A Chicken’s Guide to Living With Cancer. She says no publisher could imagine a funny book about living with cancer. Paul said he could – in 2004, long before the world at large could think that way. It was so out-of-the-ordinary that Business Week interviewed her, four years after her 2001 diagnosis and three years before my own book talked about laughing with cancer.

Many cancer patients have sought a better word to describe how they view themselves. Well, on Paul’s blog, Monique signed her comments “NASOV”: Neither A Survivor Or Victim.

Here’s the farewell comment I posted this morning on Paul’s post.
[Read more…]

November 25, 2011 By e-Patient Dave 5 Comments

Thank you and fare well, Cheryl Paradiso

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:
[Read more…]

November 24, 2011 By e-Patient Dave 7 Comments

Silkfire Watson: What if Watson lived in Amazon’s cloud?

This is going to be waaaay crazy and out-there, except my antennas are twitching that it might be reality within 18 months.

Don’t ask me where I got that date; my antennas told me. Serendipitously I read two articles tonight. (I love Thanksgiving weekend.) I’ve probably got the details wrong, but consider three technologies:

Amazon’s new “Kindle Fire” tablet
Amazon’s new “Silk” browser
IBM’s Watson.

1. Kindle “Fire”

In case you missed it, there’s been enormous talk about Amazon’s latest Kindle product, the Fire. It bears little resemblance to previous “books only” Kindles – it’s a media-streaming tablet. To understand what a big difference this is, see the new Wired interview with Jeff Bezos, CEO of Amazon.

Note: all is not great – I’m a strong believer in David Pogue’s reviews at the New York Times, and he says this first version of Fire is ugly-bad: [Read more…]

November 24, 2011 By e-Patient Dave Leave a Comment

Thanksgiving. BOY do I give thanks.

For superb doctors: primary Danny Sands, oncologist David McDermott, urologist/surgeon Andrew Wagner, orthopedic surgeon Megan Anderson.

For superbly skilled and caring nurse practitioners and nurses, starting with Kendra Bradley (who “got me” as a patient instantly and knew my needs, due partly she says to her years in pediatric oncology), Gretchen nee-Chambers now-something, Virginia Seery, MeeYoung Lee…

For the power of patient communities, particularly my KIDNEY-ONC group (managed by Robin Martinez) on ACOR (founded by Gilles Frydman).

For Paul Levy, who was CEO of Beth Israel Deaconess when I was “doctor-shopping” in 2003. I’d known him in college a bit, and hadn’t seen him much since then. But when I asked if BIDMC had primary doctors, he said “You’ll probably like this guy,” and connected me to Dr. Sands. A direct hit.

And I’m thankful for the world-changing wisdom of thought-leading organizations like Robert Wood Johnson Foundation, California Health Care Foundation, and Pew Research, especially the Pew Internet and American Life Project. (Actually Pew doesn’t lead thought, they just “count rocks,” socially, and report the facts. But that in itself is an innovation, in a world overloaded with opinion about what’s happening and what’s not.)

It thrills me, no end, that I’m alive to help advance the cause of better healthcare, both to aid the clinicians who did so much for me and to offer a lifeline to the many many patients who, every day, get news they didn’t want to hear. So much is at stake, and thank you – all – so very much for your work in this cause.

Blessings.

November 5, 2011 By e-Patient Dave 35 Comments

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?

October 24, 2011 By e-Patient Dave 6 Comments

ACCEPTED! [South By Southwest proposal]

I just learned today that my proposal for South By Southwest has been accepted. This is a Big Deal in the world of public speaking, or so I’m told – I’ve never been there. (I’m such a newbie at this big-event stuff…)

The title of my proposal: “Let Patients Help: Why Healthcare Must Wake Up.”

Here’s my original post, with the full description of what I proposed.

Thank you to all who voted for it. Public votes are only part of the process, but if there had been no support, I’m sure it would have flopped.

Next step will be to figure out how to get there… it’s a lot o’ time and a lot o’ money, but you gotta do what you gotta do. And if at all possible, you don’t pass up SxSW. Last year I didn’t even apply, because my circumstances made it not even close to possible. This year it’s within reach.