e-Patient Dave

February 17, 2014 By e-Patient Dave 16 Comments

The circle of life: another family death, and a glorious child

I have such conflicted feelings about this. Another brother’s death, as the circle of life continues. It. Just. Feels. Wrong.

Having survived my own near-death seven years ago, I celebrate being alive whenever I can. So it hit me like bricks last May when my younger brother Steve died, and again in December when my best friend Dorron died. These were the first unexpected deaths I’ve ever experienced close to me.

And they were both eight years younger than me. Incomprehensible. It just doesn’t make sense, a life ending with eight years less experience??

And then two days ago I learned that another brother, Ken, age 62, has died unexpectedly. So now our six siblings are down to four.

I just freakin’ don’t know how to process this. I don’t like it, I’m not rational, of course it’s not rational, it grabs the brain at a far more primitive level than logic can ever address. I’m rereading my post about Steve’s death, and boy is it on target. Death has been around a lot longer than human thought has, and it’s apparent to me that we as social creatures are constituted to not like it, and get upset when one of our tribe disappears.

Ken, like Steve, smoked and drank. Nothing like having some public health statistics step up and kick you in the face.

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February 11, 2014 By e-Patient Dave Leave a Comment

Health quality people – important last call: NQF’s annual meeting

A quick note to DC policy people:

Chart of medical spending in America (source: KFF.org) There’s a shift in the wind, and you may want to join what I think is an important conference this Thursday and Friday. The National Quality Forum, an independent organization that defines quality measures for industry to use, is having its annual conference and membership meeting.

As regular readers know, I’ve often said that medicine is the only industry I know where quality isn’t defined by the customer, the patient, the ultimate stakeholder. That’s starting to change: NQF is now actively engaged in shifting to make patient point of view a core part of the process.
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February 7, 2014 By e-Patient Dave 2 Comments

A new era: the “consumer-patient,” via Inquire Healthcare

A new website launched last month. I’m not involved with the organization, but I almost wish I were, because what I’m seeing is what I hope we’ll see everywhere, for every medical need.

The site is InquireHealthcare.org, a project of the non-profit Health Care Incentives Improvement Institute (HCI3). It’s the first time I’ve seen a new term that I love: “consumer-patients.”

(Some activated consumers hate the term “patient” and some activated patients hate the term “consumers.” My own views are in the glossary of Let Patients Help. Here I want focus on what you get when you mix the best of both – because that’s what they’re after on this site.)

It’s got three things I’ve never seen combined: shopping tools, self-assessment tools, and community activist tools. How’s that for a toolbox to create change? (Again, I wish I were bragging about my own work, but I never heard of them until they launched.) Specifically:

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February 2, 2014 By e-Patient Dave Leave a Comment

Finally! Composite video of my call to action at Blue Button Plus Developer Challenge (New York, July 22)

Last month I blogged that a “lost speech” had finally surfaced. It was my closing speech at an event last July, and said why this moment (this year, this series of conferences) is an essential turning point:

“The event was a conference conducted by our Department of Health & Human Services to educate and encourage software developers about the “Blue Button Plus” initiative. … which is really important for the future of health IT, and not just in America; this innovation initiative will change what patients and families are capable of.”

And I said:
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February 1, 2014 By e-Patient Dave 5 Comments

Video of my AMIA keynote is live

In November I posted about how fun my opening keynote was at AMIA, the American Medical Informatics Association. See that post for tweets from the event and discussion. It was great fun – a conference of 2,000 information science geeks – people who understand data, especially what it’s for and why data quality is important! Boy does it save time when you start from a common view.

This week AMIA’s Jeff Williamson got me the video of the speech. Here it is, with Dr Danny Sands introducing me. (He’s one of the revered figures in the association; they’re also the ones who published his 1998 article on doctor-patient email.) See notes below about what makes this talk different from others. Dr. Sands starts by noting that it was 50 years since JFK’s assassination.

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