e-Patient Dave

Power to the Patient!

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“Let Patients Help” gets two wonderful reviews

Let Patients Help front coverI got two wonderful surprises this week about Let Patients Help – unexpected, very favorable reviews of this little book.

The first was Tuesday on the Health Leaders web site. (They’re the magazine for medical management that in 2009 featured Dr. Sands and me in their cover story “Patient of the Future,” then included us in their “20 People Who Make Healthcare Better.”) In What the E in e-Patient Really Means, editor Scott Mace shows that he really gets it:

I’ve made a career out of documenting the empowering effects of technology. In the 1980s, among other things, personal computers were a way to engage students of all ages through the interactivity of educational software. In the 1990s, the Internet equipped us to get the most current data. In the 2000s, Web services enabled us to build “digital nervous systems” that automated the publication of that data, and our ability to subscribe to updates through the power of technologies such as RSS and search technologies such as Google.

But here in the 2010s, it’s ironic that the most personal of data we generate – that about our health – remains locked in healthcare’s vaults for a variety of reasons. …

It’s a long, perceptive essay – almost 10% as long as the book itself! The items he cites are truly the core of the message. Well done, Scott.

The second was today in Oncology Times – someone tweeted that they’d just seen it. (Why do I only learn of these things through Google Alerts and Twitter??) In the “Practice Matters” column, Lola Butcher writes Let Your Patients Help You.

Lola is informed and funny. Excerpts:

If you don’t know what [e-patient] is, click here and get with the 21st century. …

It only takes about an hour to read but if that seems like too much, skip to the “tip sheets” at the end. … Look for two sections — “Ten Things Clinicians Say That Encourage Patient Engagement” and “Ten Things Clinicians Say (or do) That Discourage Patient Engagement” — written by deBronkart’s primary care physician and co-author, Daniel Sands, MD.
I’ll just take issue with this closing item:
deBronkart has a big smile and a humorous way of making his points but physicians who do not support patient engagement should be very afraid of him.

Afraid of moi??  I wouldn’t say they should be afraid of me, but they sure will feel uncomfortable as the new reality unfolds. And that’s happening with or without me – I only talk about it, to spread the word and shed light on what’s possible.

Thanks to both Scott and Lola for drawing attention to this little book. Its tummy tickles every time someone says something nice.

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Terrific event in Long Beach, Monday – act now – last minute opportunity

I know this is last-minute.  I’ve been busy and disorganized, and thrown for a loop (frankly) since the death in my family earlier this month.

Don’t miss this. It’s Monday. Act now! (How often do I say that??)

If you’re a health geek, or a patient centered care geek, or anything of the sort, and you’re in southern California, don’t miss this. Tell your boss right now that you should go – it may be the best conference deal of the entire year (and I see a lot):

Monday, June 3, Long Beach, CA, 8:30-5:00
(Details are at the form link below.)

$150 for one person in the health professions
$99 each for three or more (bring colleagues – 3 for the price of 2!)
$65 for patients and family members!

The event: Patient & Family Centered Care Partners @PFCCPartners – fourth annual conference. Speakers:

  • Dave with Bob Wachter 4-25-13Opening keynote (8:40 a.m.): Bob Wachter @Bob_Wachter, whom I recently heard speak at the Michigan Hospital Association (right). He’s chair of the American Board of Internal Medicine (I’ve worked with some of their people – really terrific), and Wikipedia says he’s “a prominent academic physician on the faculty of UCSF … regarded as the academic leader of the hospitalist movement, the most rapidly growing field in modern medical history.” He is a true leader and a great speaker.
  • Closing keynote (4 pm): Me

Also presenting will be Martie Hatlie, a terrific moderator I worked with at a PCORI meeting earlier this year. Tons of experience in patient and family centered thinking.

All this for $150 or less, with extra-special pricing for patients and family!

Let them know you’ll be coming: fill out this info form (site includes full event details). Walk-ins will be welcome but it helps a LOT if they know you’re coming!

See you there – two global keynote speakers, bookending a great day for a great price, hosted by a great organization!

(And who knows, maybe a beverage afterward… I hear Long Beach is lovely in the evening, and I’m staying over. :-)

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Extraordinary praise for Let Patients Help from a CEO

Let Patients Help front cover

Since Let Patients Help was officially released on April 15 there’s been lots of praise. The most exciting just arrived today: a hospital CEO who’s making the book’s ideas into something of a mission, starting now.

On her blog “Executive Rounds,” today Leslee Thompson posted “Let patients help” and other things I am learning. She’s CEO of Kingston General Hospital in Kingston, Ontario, where I spoke two weeks ago at their “KGH Connect” event. Please go read her post; these excerpts show how much she gets it:

One thing I do when looking at my calendar is to imagine what a patient in my hospital would think about how I am choosing to spend my time and energy. Would they approve of me sitting in my office reading reports about how to improve patient satisfaction? No. So I head on up to the wards and talk directly to patients and families.

[Read more…]

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Please watch this TED talk

On May 10, at the KGH Connect conference in Kingston, Ontario, I met Dr. Brian Goldman; we both spoke there.  In 2011 he gave this 19 minute TEDx talk in Toronto; please watch it. It’s stunningly clear, grippingly told, and extremely important to understanding the real truth about medicine: it’s complicated. Really complicated.

Doctors make mistakes. Can we talk about that?

He gave me a copy of his book The Night Shift, a chronicle of one night in the ER where he works. The night’s cases are interspersed with the stories and experience that come to an ER doc’s mind with every new patient who comes in. I’ll write more about the book soon. First, as preparation, please spend 19 minutes watching this. What did you learn? Any new thoughts?

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Difficult choices with imperfect information

On 9/11 I was in Chicago at Print ’01, a huge exhibition in the print industry. I turned on the TV in my hotel room just in time to see the second plane hit. It was unworldly – and I was 1200 miles from home.

During my cancer I learned that although we long for certainty, sometimes it’s just not possible. We can only choose from available options, with imperfect information, and see how it plays out. I was desperately sick and wanted a sure treatment, but there wasn’t one. When I learned about interleukin I wished I could know if it would work for me, and they couldn’t say – even Beth Israel Deaconess, one of the best places in the world for this disease, couldn’t say. Today I know they acted professionally by telling the truth: no false hope, and no false despair – just the truth, which my primary physician Dr. Danny Sands might say this way: “Sometimes we just don’t know.”

As regular readers know, that was freshly reinforced when my younger brother died unexpectedly eleven days ago. (See A death in the family and A sister’s perspective.)

Now, due to another uncertain family circumstance, we’ve decided my June trip to Australia must be postponed to another time.

[Read more…]

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A death in the family, part 2: a sister’s perspective

Suede with microphone
My sister, Suede

Boy, is this a lesson in how two people can experience the same soul.

Last night I posted about the unexpected death last Wednesday of my younger brother Steve, the first of six siblings to pass on. I reflected on the many ways this news was affecting me, even though I had never been close to him. I said I was writing in part to aid the process of dealing with death, especially an unexpected death.

Part of that process happens in family dialog as those left behind share their memories and perspectives. So one comment on yesterday’s post struck a chord: “Listen carefully at the memorial as you will learn things about him you never knew.” It was from online friend Marge Benham-Hutchins, who should know: she lost her husband to cancer last year.

Boy was she right – it started today. Our sister Suede, the jazz/pop/romance singer, was just 14 months older than Steve; they were close growing up, separated from the rest of us by several years on each side, and they stayed close forever. But I had no idea how close, how much she knew that I didn’t.

Here’s what she sent about her experience of him, in response to mine. I’m so grateful, yet saddened anew by our loss. [Read more…]