I’m going to START with three clarifications, because sometimes people don’t read footnotes. :-) Read before proceeding.
- I’m NOT saying there’s anything wrong here – don’t anyone assume that every time I blog, it’s a warpath. :) I’m just asking a question. My guiding principle on medical treatments and costs is that people should know what their options are, so I’m presenting my situation and asking.
- I’m also NOT asking for treatment advice – I’m only asking about costs and whether it sometimes makes sense to get pathology done elsewhere. (We’ve already discussed treatments and I’m satisfied.)
- As I’ve said before, I’m NOT recommending that anyone else act as I choose to.
Also, regular readers know that as a former cancer patient in New Hampshire, my insurance options were limited, and I chose $10,000 deductible, so all of this will come out of my pocket. As I’ve blogged many times before, this turns out to be a nifty way to discover how the money actually flows in American healthcare, which is usually really hard to find out.
Below is the pathology report from some biopsies I got in January. The bill is $416 list price; after the usual insurance discount, my balance due is $312.
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Regular readers know that I sometimes will post an e-patient request, and some of those answers go into my list of patient communities on this site. Here’s one I can’t believe I haven’t written up, because I know there are lots of them! But that’s probably why nobody’s ever asked, here.
An audience member from overseas writes saying that a relative has been suddenly diagnosed with colon cancer, with poor prognosis. I went to my Communities page and found nothing. That’s crazy because I know there are lots of communities for colon-related conditions. (My page has several for Crohn’s and colitis, but not colon cancer.) Who are you, out there??
My memory is notoriously bad so I apologize for not remembering you all. Off the top of my head I remember:
Who else?? As always, answers will be recorded on the Communities page, for others to find. Thanks!
Monday night at the gigantic (37,000 people) HIMSS conference in Orlando (Health Information Management Systems Society), Healthcare IT News presented its 5th annual “H.I.T. Men & Women of the Year” awards. I was one of the nine nominees in the “Shapers & Influencers” category, and I was thrilled to learn that I was one of the three winners! Announcement and photo here.
Even better, famed art activist Regina Holliday was another. So our Society for Participatory Medicine nearly swept the category. That’s a huge acknowledgement in a Society that still barely knows patients exist – not a single patient was invited to speak in the big hall.
My thanks to Healthcare IT News, and to emids, the company who founded the award.
I’m thrilled to announce that my book Let Patients Help is now available for sale, in paperback or Kindle, in Spanish!
The project was managed by Luis Fernandez Luque (@LuisLuque), longtime member of the Society for Participatory Medicine and organizer of my tour of the northeast part of Spain two years ago. This man sees the future and makes things happen.
Please spread the word to the whole Spanish speaking world. ¡Dejad que los pacientes ayuden!
Thanks too to the other team members whose work made this possible:
Jaime Cubero Guerrero (Editor)
Miguel Tovar (Editor)
Elena Sainz (Editor)
Patrick Partridge (Translator)
Click to visit the pre-registration page
After almost a year of work, I’m thrilled to announce that we now have an “Available By” date for my first commercial, professional continuing education course:
in Health Information
An online C.N.E. course
at the University of Minnesota
School of Nursing
Available by April 1, 2014
It’s been developed and tested, and is in the final revisions. The screen capture at right is the course web page.
Registration will be open by April 1; to pre-register and be notified, sign up here.
From the course website:
Healthcare team members interested in learning to plan for and implement supportive actions for patient engagement and activation through the use of health information technology (IT).
The course is primarily targeted to nurses, who (in my experience) spend the most time engaging with patients and families. As noted below, nursing C.E. credits have been awarded. Other professions (MD etc) may be able to apply for credit, but that’s up to you, as the web page explains.
This is not a lightweight short/simple C.E. course.
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I’m at the gigantic HIMSS health IT conference in Orlando, in the consumer pre-conference. In my opening talk I briefly mentioned something I’ve said for years:
Have you looked in your chart? Your medical record? Do you know for a fact that there are no errors in it?
Most audiences appear intrigued and thoughtful at this. But ha ha ha, at HIMSS (people who work in health IT), on Twitter there are two interesting reactions:
- Several different people tweeted it, showing unusual interest in it, and more than a dozen retweeted those
- And, a whole bunch of people are saying “Who says?? What’s the source??”
How fascinating. Well, here’s what I know about it.
- 18 months ago I spoke at the Veterans eHealth University, a virtual university for people who work in the VA (veterans’ administration) health system. They asked me to submit some interactive audience response questions.
- One was to ask the audience if they had checked their own record. The results are in the slide above. (Sorry about the typos – that’s how the A/V guys typed it into the computer.) Results:
- 50 / 66 (76%) said no, they’d never looked. (Have you?)
- Of the 16 who had looked:
- 5 (31%) weren’t sure whether there were errors.
- Of the 11 who were sure:
- 7 found mistakes (64%)
- 4 found the record was perfect (36%)
So, roughly: of those who had checked, about 2/3 found mistakes: missing allergies, wrong medications, wrong diagnoses, etc.
Since then, depending on the audience, I’ve asked this of other audiences. Every time of those who’ve checked, about 2/3 found errors. Every time.
This is not a peer reviewed journal article. I’d love to see one! I also encourage all health IT speakers to ask their own audiences. Maybe mine aren’t typical, somehow.
And by the way – if you’re skeptical, do you know if your record contains everything doctors and nurses should know about you, and doesn’t contain errors?
As always, discussion is welcome!
It’s like the old Capital One commercials – do you know “What’s in your wallet?”
Updates added later:
- At the British Columbia Patient Safety & Quality Council conference later that week, in a post-keynote workshop, I asked the room about this:
- Of more than 100 in the room, eight had examined their entire records.
- Of those, six had looked errors, and two had found them completely accurate.
Regular readers know that in everyone’s efforts to improve health and care, I’m fascinated by work in other sectors too, because a lot of the ways that medicine falls short of its potential have been solved in other industries. Our failure to use those methods (too often) is not just a disservice to patients – it’s a disservice to clinicians who work hard, too.
My friend Jim Conway, a titan in the world of safety and quality improvement (LinkedIn), told me about a new conference that may interest you too, if you work in improving quality. He’s keynoting. I’ll be attending even though I’m not speaking, because anything that semi-retired Conway will focus attention on is good enough for me. As a small new event they’re looking for other sponsors, too, in addition to the Joint Commission on Accreditation of Health Care Organizations and Dow Chemical:
Institute for High Reliability Organizing
- March 28-30, Fort Worth, hosted by The University of North Texas Health Science Center
- Organization website here.
- Event website here.
- Registration here.
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Updated at noon – fixed missing links
Event: “Involving Clinicians in Payment and Delivery Reform: The Role of Social Media and MOOCs.” The event’s website is here and the Twitter archive on Symplur is here. I’m on a panel 11-11:45 and they can’t display slides, so I’m posting some here, selected based on what I’ve heard in the previous panels. Social media busts through boundaries!
Today I turn 64. So let me introduce to you the act you’ve known for all these years: Sgt. Pepper’s Lonely Hearts Club Band, performing “When I’m 64″:
Notes about the song:
- When the song finishes, the rest of the album will play – stop it if you wish. See also the playlist, at bottom.
- If you don’t know the song’s history, you must read it on Wikipedia. Did you know Paul started it as a teen, and the song features a clarinet trio?
For months (actually years) I’ve been planning to write this happy, cheery post using this song. Then, as I wrote yesterday, my brother died last week, on top of two other close deaths (including another brother) in the past nine months.
Celebrating a birthday is hard to do in the same spirit when people close to you are dying. The Beatles sang of cheery near-retirement grandparenting. It’s harder to be cheery about when it’s in your face that some people don’t make it.
Mixed feelings. Sad, but also glad and grateful that I am here – and freshly aware that I’m fortunate. I’m unspeakably glad that I’ve lived to know my granddaughter Zoe, glad to be with my daughter for this part of life, so very glad to hug my wife day after day after day – and glad to still be talking to my mom at 84, a titan of a family leader.
Retirement may be an illusion for most Americans today, but grandchildren aren’t – not when I’m 64.
About the number:
In MIT terms 64 is (2×2×2)², or 1,000,000 binary. Yes, for the next year I’m binary millionaire: a nerd, a geek, and proud of it. I love me some math, I love me some data, I love me some logic. As I said in my AMIA keynote, “Come to the dork side: we have π!” (You can buy shirts that say it.)
About that era:
My age became conspicuous to me when, this month, we reached 50 years (a half century!) since The Beatles arrived in the US.
As a boomer born in 1950, I often reflect on the decade when I came of age … age 10-20, years 1960-70:
- In his farewell address, President Eisenhower, the heroic World War II general, warns of a “military-industrial complex.” (Note: it was a general, not a hippie, who warned us.)
- Students stage the first sit-in at a segregated lunch counter
- The first televised presidential debates are held
- 1961: the first Freedom Riders ride mixed-race buses into the segregated south. I couldn’t understand what we saw on TV.
- 1962: the Cuban missile crisis. (I lived outside Fort Belvoir, outside DC, and Boy Scouts were cancelled that night – most scout leaders were military officers.)
- November 22, 1963: JFK is shot
- 11 weeks later (2/9/64): The Beatles arrive
- Also 1964: the U.S. Civil Rights Act is passed
- 1965: the Voting Rights Act is passed
- 1966: Medicare, the first US Federal health care program, is enacted
- 1967: The Beatles record Sgt. Pepper
- 1968 (when I was 18):
- Martin Luther King is killed
- 2001: A Space Odyssey is released
- The musical Hair opens on Broadway, with its hippie politics and nude scene
- June: Bobby Kennedy is killed
- I want to point out that by this time it felt like the whole world was falling apart. Assassinations were rare in America, and now they were common. What was happening to the life I knew, where the police took care of everything? Answer, coming right up:
- August: Mayor Daley’s “Whole world is watching” cops beat up legal demonstrators outside the supposedly liberal Democratic convention.
- This was quite hard for an innocent, trusting Midwest boy to comprehend, especially just before:
- September: I left Minnesota for college in Boston – quite the radical change of scene.
- November: Yale announces it will admit women.
- Apollo 11 lands on the moon
- The Whole Earth Catalog begins publication
- 1970: The Beatles broke up. Hard to imagine they changed the world like that and were gone six years after arriving here.
Whoosh. Compare that to how much social change has happened in the past ten years, since 2004. Whiplash, while the world around you goes to pieces. No wonder Wikipedia says about the 60s:
Some commentators have seen in this era a classical Jungian nightmare cycle, where a rigid culture, unable to contain the demands for greater individual freedom, broke free of the social constraints of the previous age through extreme deviation from the norm.
Well, that’s the context of where my life was, a half century ago. And now I’m 64.
The search for meaning
I was already thinking about all that stuff long before my brothers died (and my dad in 2005). Today I read a book about meaning and purpose that I’ll write about soon.
Look, it’s all complicated. All I know is, I’m glad to be alive, I’m so glad for the people who are still here with me (including you), and I’m looking forward to the coming decades. We have so much more change to create, before we’re done.
More about the album:
p.s. Here’s the track list of the whole Sgt Pepper album, from the YouTube page?
01. Sgt. Pepper’s Lonely Hearts Club Band 0:00
02. With a Little Help from My Friends 2:02
03. Lucy in the Sky with Diamonds 4:45
04. Getting Better 8:14
05. Fixing a Hole 11:02
06. She’s Leaving Home 13:38
07. Being for the Benefit of Mr. Kite! 17:14
08. Within You Without You 19:52
09. When I’m Sixty-Four 24:55
10. Lovely Rita 27:35
11. Good Morning Good Morning 30:16
12. Sgt. Pepper’s Lonely Hearts Club Band (Reprise) 32:58
13. Day in the Life 34:17
Dorron & family, 2007
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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