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.
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 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. Continue reading →
 Updated a day later, adding more recollections. See also the amazing remembrance our sister Suede sent me, in response to mine. It changes everything.
Wednesday afternoon, unexpectedly, my younger brother Steve died, age 55. He was one of six siblings, the first of us to go.
This is the first time anything like this has happened to me, and the effect has been something to watch. I hesitate to write about this because I know so many of you have plenty of experience at death; plus, a thousand people have probably said what I have to say, and better. I just want to record some of the strange thoughts that have come to mind, partly because it’s part of the process and partly because the thoughts are weird.
And I want to remember Steve.
Basics
I got the news just before a dinner meeting Wednesday where I was to give a speech. I had no emotional reaction at first; as is apparently common, my mind zipped into running through logistics (what needs to be done, and when; “When will this sink in?”), then I got on with the evening and my travel to Toronto for the next event.
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 Click to visit the post on Forbes Update 5/10: fixed the link to the Forbes post. Thanks to Flora for reporting the mistake!
My new post on Forbes has generated the most activity I’ve had there, in terms of views, Tweets, links and comments. Its topic is an amazing new thought that’s come to light just this year, thanks to a TED Prize talk that was given this winter by a guy name Sugata Mitra. His thing is “SOLE”: Self Organized Learning Environments.
(I know some of you already saw this on Forbes, but a lot of my readers don’t go there.)
Click the image (or here) to visit the post and watch his 2013 TED Prize talk.
He’s clearly crazy. In 1999, in the slums of New Delhi, he put an internet-connected computer through a hole in the wall that’s the boundary of the slum region, so little kids could get at it. He gave them no instruction, and came back months later. What he found, as you’ll see, is that the kinds had figured out all kinds of stuff, just by poking and exploring. Without mature supervision.
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 Click to visit Susannah's post That’s what Susannah Fox just said on her blog.
It’s amazing: for years I’ve admired the wisdom of her research and insights at the Pew Internet and American Life project; heck, I quote her juiciest statistics in every speech I give. (To find them easily, I even suggested they create a tips page bit.ly/PewHealthTips – and they did, because they listen.) And since the book summarizes what I’ve learned in my travels, of course it’s in the book.
So imagine my surprise and pleasure when Susannah said today in a tweet [below right] that in Let Patients Help, she learned new things about her own data!
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This weekend I received a note of support for my new book that moved me, partly because of who it was from, but also because he gets it: patient engagement isn’t just about care providers listening to patients. Patients need to be engaged – to get it in gear – to speak up about what they want, and be active partners in their care.
The note came from Jim Conway, one of my greatest inspirations in this journey:
 Dave, I just finished Let Patients Help! Simply, Bravo!
While I am a confirmed fanatic of patient and family centered care, and would endorse the book enthusiastically for that, I read it as much this week as a patient. I’ve been having some problems with my diabetes and blood sugar—nothing big—and it triggered strong reflections on my care partnership and my role also as a member of my team.
Much like you, I have a strong team with access to great info (Open Notes and PatientSite). Yet like many healthcare professionals, I can move into a shell, or even sulk, when it is about me. The Ten Fundamental Truths About Health and Care not only confronts the license we all have to be engaged in our own care but also comfortably helps us use it for a collective good.
Thanks to you and Danny for a job well done on a journey we all must take.
For information on how to buy this book ($8 or less), see the book’s web page. As reviewer Catherine Rose said on Amazon, “it’s cheaper than most parking fees at the hospital.”:-)
And please, tell friends … and your contacts in medicine. It’s concise, designed to be worth the time for every reader, patient and clinician alike. It really could help improve health and care.
If you don’t know Jim …
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I keep hearing disparaging things about what lousy consumers patients are – unable to understand how things work, unable to understand the options. Well, as I often say in my speeches, in any other industry you go out of business if consumers don’t understand you – because customers ditch you. But in medicine we consumers can’t easily do that. Heck, we can hardly get our hands on information in the first place.
Case in point: when I shopped for health insurance in 2011, I found out just how slanted the table is when companies offer insurance and consumers buy it. Here’s the true story of the information I was given.
1. Cancer? You can’t play in our market – go away.
First, Blue Cross of New Hampshire asked if I’d ever had various things. When I said cancer, they went from cordial & friendly to cold and “go away.” It was rude, frankly.
But at least I could get at the high risk pool. Some states won’t let people like me get ANY insurance without a six month waiting period. (Up yours, states. And up yours, regulators in those states.)
2. Here are your options. Figure it out yourself.
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Just a quick note as the weekend ends -
The book launch celebration for Let Patients Help has finished. Over 1500 copies are in circulation now, including both ebooks and the print edition.
I’ve updated the book’s web page, with the complete list of links to all the places to buy it online, and the newest praise, which I love:
“There’s not a doctor or patient in the land who won’t benefit from reading this clear, concise manual which sets out how each can contribute and collaborate to get better and safer healthcare.”
Dr. Tessa Richards, Analysis Editor, British Medical Journal
Thanks for everyone’s support! And remember, now that the book’s finished, the real work begins: spreading the word in earnest, and getting zillions of people to know what’s in it.
 $8. Transformational. I have a suggestion, a bold one, to go large with this cause:
Buy and distribute a pile of this book. Here.
I say that because of the strong response it’s getting. As any proud parent (or author) would be, I’m thrilled at the response to Let Patients Help. I mean, I’m little ol’ me, with no big marketing department, no publicist, etc, but in the past 11 days well over 1,300 people have downloaded the free ebook offer (which ends Saturday), and scores of people have purchased the print edition.
It’s really interesting when people buy something they could get for free. They must like it.
Meanwhile, @DoctorCaldwell here in the U.K., where I just spoke at a conference, downloaded it and already said this on Twitter:
@ePatientDave Dear Dave that didn’t take 90 mins to read!
Yes, I made it short – so it’s worth reading. He continues:
How do I get 100 copies to use with my inpatients? :-) :-) Gordon
Why not?? It reminded me of what famous doctor @Berci said on the back cover: Continue reading →
 I just finished a talk at the Internatioal Quality Forum hosted by the British Medical Journal and the Institute for Quality Improvement. (The Twitter hashtag is #Quality2013.) What a thrill to talk here – making the case to Let Patients Help!
There was a timing glitch, though – they accidentally ended my talk 15 minutes early, so there was no question and answer. Attendees, if you’d like to discuss, leave a question in the comments here.
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