Extreme Makeover Home Edition: the deaths in America of two young fathers

My wife likes to watch Extreme Makeover, Home Edition. Tonight's episode tells of Pennsylvania resident Trisha Urban.

In February 2009 Trisha was pregnant and her water broke. Before they left for the hospital her husband went to do some last minute farm chores and never came back.

He had died, age 30. It seemed odd that the show didn't say how, so I googled. The Reading Eagle had the immediate story of the death and the birth. But then this, a year later in the Allentown Morning Call: For one Valley family, reform's 'too late for us'

Trisha and Andrew Urban once counted themselves among the ''lucky ones'' -- the people covered by health insurance. In 2008, Trisha was well into her first pregnancy and Andrew had developed a serious heart condition. Doctor visits became routine.

But their luck turned in September 2008. Their health insurance company sent them a letter saying Andrew's full-time internship, part of getting his doctorate in psychology, was only part time. The company dropped them from the health plan.

The Urbans and the university wrote letters and argued the internship was full time and the insurance should be valid, Trisha said. But to no avail. When they tried to get insurance elsewhere, they were denied because of their pre-existing conditions.

Five months after losing their insurance, Andrew Urban died. That same day, his daughter, Cora Urban was born.

About a month later, with mounting debt and mourning the loss of her husband, Trisha received another letter from her health insurance company: She and her late husband had been reinstated on the plan.

''Unfortunately, the health care reform is too late for us,'' said Urban, 33, of Tilden Township.

So what the show didn't say is that this young father had a serious heart condition, was cut off from care by the American healthcare system, and died from the condition on the day his daughter was born.

My mind shot back to late 2008, a year after my illness, when I had just begun my interest in healthcare. I'd been reading Tom Daschle's powerful, informative book Critical, and blogging about it. He relates how President after President since Roosevelt had tried to provide healthcare for all (which every developed nation has, except ours), and time after time, one interest or another had blocked the change. As I read and blogged, the Urbans had just been cut off.

And my mind shot next to another academic who had no health insurance, so his access too was denied until for him it was too late: Fred Holliday, husband of my friend Regina, the amazing mural painter, of ReginaHolliday.blogspot.com. He died a few months after Urban.
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I was raised being taught that America is the land of opportunity, but I mourn that these two young fathers' deaths involved something else distinctly American: denying healthcare to people who need it. It clashes loudly with "land of opportunity."

Today America's health reform bill (Patient Protection and Affordable Care Act) has not yet been fully executed - tens of millions still don't have coverage - but the law is passed and the wheels are turning. I'm so glad this administration got the job done: Thanks to the President, and thanks to every legislator, and hard-working aide and advocate, who took America where it has never been before: Extreme Makeover, Health Edition.
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I'm posting this on my old personal blog, where I wrote about health issues before I went into business. This topic isn't specific to patient engagement - except that it frustrates patients who do want to be responsible for themselves and access the care they need.

Building a career as a "public patient"

To newcomers: this is my original blog, started in 2007, months before I discovered the word "e-patient." Today my business website is ePatientDave.com. For this series, I decided to return to my roots.
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Two years ago, when I was just starting to build a career in public speaking, I was constantly stymied by the fact that nobody wanted to pay for patients to speak - and, at least as importantly, if a conference organizer did want a patient speaker, they had nowhere to turn.

On this blog, I posted A Call for Patients Speakers Bureau. Excerpt:

We need to create a speakers bureau that lists informed patients who are available to participate in conferences and other speaking engagements. I think this idea was first suggested to me by the wonderful Ted Eytan MD. We need infrastructure (a place to host the list) and funding for the speakers.

Everyone's talking about creating a new world of healthcare that's more patient-centered or patient-oriented. Actually, in its fullest realization, this will be participatory medicine. (See the many posts on the e-patient blog.)

But how can we do that if patients aren't at the table as this new world is thought out?

The situation is getting better, but we still don't have that bureau. Nor do we have a pathway for patients to follow if they'd like to develop a career - or at least a bit of income - out of their commitment to helping improve healthcare. So I'd like to start discussing that here.

Caveat: I have no idea where this will lead. I created my own speaking career with no plan, and sometimes it's been great and sometimes it's driven me crazy. This is not "Patient Speaking For Dummies" - this is "What can we figure out together that will be helpful?"

I've been wanting to do this for some time, but I was finally prompted by separate notes by Twitter friends Erin Breedlove (@ErinRBreedlove) and Ilene Brenner (@IRB123). Ilene wrote:

Dave, I know someone who was injured as a professional dancer, paralyzed, and through arduous physical therapy regained her ability to walk--even dance!

However, during the course of her recovery, she discovered pilates and has worked to help others with chronic pain, as she was helped. I think she is a true inspiration, and with her excellent stage presence and speaking ability, I know she would make a fantastic speaker. I think she could inspire the many people who suffer traumatic injuries, and who live with chronic injuries.

Do you have any advice for her, or others like her, so they can get out there and speak to people?

Answer: no, but let's start. Here's what I did. This is no guarantee of anything. I'm just offering what I have. I was a good public speaker before healthcare, and I was a high tech marketing guy so I know something about understanding your audience, understanding their concerns and what motivates them, and speaking in a way that they (not I, not you) will find valuable. With that as background, here's what I did, rephrased as advice to a patient starting in the same place.

• Figure out what you have to say that will be of value to someone. Having a good story is one thing, having a terrifying sad story is another thing, but do you have anything to say that will change anyone's ability to do their job? Or change their outlook on life? If you don't, you need to ask, what value would you be bringing to a conference? (You might be, but you better think about it.)
  
  
• Figure out what conferences would be interested in that message. Ask around: ask your doctors, your hospital administrators, etc. This can be hard work. Do it.
  
  
• Develop your speaking skills. If you want to be paid to speak, you have to be worth someone getting out their checkbook. Don't let this stop you from trying; you need to gain experience.
  
  
• Create a website or a Facebook "Page" where you can post things. I'm geekier than a lot of people so mine is fancier than most (www.epatientdave.com) but yours doesn't have to be. Facebook is a lot easier. It may be seen as less professional, but it's a place to start.
  
  
• Learn to be competent at PowerPoint or Prezi.com or Apple's Keynote, the most popular presentation software. In later posts I'll discuss this more, if you want.
  
  
• Expect to be paid little or nothing at first, until you've proven your value.
  
  
• When you want to get serious, write a book. It doesn't have to be fancy, it can just be an e-book or a PDF, but you have to be able to say "Author of ...."

That's it for now - I know it's incomplete - more later. Discuss. Ask questions. To get updates, subscribe to this blog (top right).

p.s. We still need that speaker's bureau! It's a lot of administrative minutiae. I'd love it if some right-minded agency would take this on. (Or one of you who's willing to do the work, if you're good at minutiae.)

The King's Speech: yes.

Yes, thumbs up. Yes, go see it if you're at all interested in -

• History
• Leadership
• Courage
• Standing up to a challenge
• Great stories.

It's one of those rare movies where the audience applauds - especially interesting since it's been in theaters for nine weeks now. And it's one of the rare ones on Yahoo Movies where both the critics and viewers rate it A. Roger Ebert's review, as usual, matches my view.

On a personal note, I was strangely moved by Colin Firth's portrayal of the parallel challenges "Bertie" faced: stammering, and being thrust to the throne as his country approached war. He compellingly conveyed both feelings: "I don't know how to do this" and "I know I must." I was moved to tears by the portrayal, credible and not overdone, of courage and backbone in the face of fear and duty.

Have you heard Martin Luther King's final speech - the whole thing?

^{Delivered by Martin Luther King, Jr 3 April 1968, Mason Temple (Church of God in Christ Headquarters), Memphis, Tennessee. It is ripped from a DVD from the series Great Speeches, volume 6th, published by EVG (Educational Video Group). To be watched for educational purposes only.}

Everyone's heard the final words of Dr. King's last speech - "I've been to the mountaintop," "I may not get [to the promised land] with you" - but do you know what Dr. King was talking about that day, the day before he was killed?

I was 18, about to leave high school and go to college in Boston. My head was about to get turned around seriously, but from my comfortable home in the Twin Cities suburbs I had no idea what all these protestors were upset about.

I didn't recall the circumstances that day in Memphis, but this full length version of the speech starts with a narrator's description. Then listen to King's extraordinary oration, his call to his followers to keep the faith: "Only when it is dark enough can you see the stars"; "A man can't ride your back unless it is bent"; his retelling of being stabbed by a black woman in 1958, and why he's glad he didn't die that day - the things that happened every year since then.

The people King stood for were being firehosed to the ground, Maced, attacked by police dogs, for their peaceful assembly to protest segregation; and he lists an amazing array of companies to boycott because they wouldn't stand up to change it. Yet he preached non-violence, no matter what. This is a great orator, with a deep passion for the rightness of his cause.

The speech ends around 21:10; the video continues with the start of another track from the DVD.

Four year old drummer Howard Wong

Here's the weekend's most fun discovery. My Uncle Sandy sent this - four year old Howard Wong. Watch this - around 2:15 we start to see a future rock 'n' roll monster:–)



I dug on the internet (imagine that) and found this one at age 3, a bit less sophisticated (of all things):



And way back at 23 months - a bit tentative, but he sure gets it:



Isn't it fun to see someone discovering what they were put on this earth to do?

Defying Gravity: an artist hits a new level

I've written before about my sister Suede, a professional jazz singer who lives on Cape Cod. On January 1 in Provincetown she delivered her annual New Year's show.

This year there was a big difference: she'd had significant abdominal surgery 11 days earlier, and none of us knew whether she'd be able to sing at all.

But she did, and she blew us away. Still recovering from deep incisions through four layers of muscle wall, she didn't have the customary powerful vocal mechanism that singers learn to use - and hers is stronger than most. But the artist was still there, and she pulled together everything she did have, and she performed. Man, did she perform.

Defying Gravity, from Wicked, starts: "Something has changed within me - something is not the same." When she sang it this night, there was new meaning; we got to see who the artist is when the usual palette isn't there. And a different kind of power emerged: authentic, vulnerable, sometimes softer. Yet there was no sign of weakness or compromise; before her last song she announced she'd had the surgery, and there were gasps and murmurs.

And the show she found inside her was newly excellent. There were two standing ovations within the show, before we even got to encore time. In 20+ years of seeing her perform I've never seen that. Yes, this was mastery; this showed a layer of the performer we'd never seen before.

In the end, for her second encore, she pulled out her eternal crowd-pleaser, Sister, from The Color Purple. Including trumpet solo. (Hear the full song on her sample tracks page.)

Unbelievable. As a chorus singer myself, I have an inkling of what it must have taken to achieve that breath control with that sutured abdomen.

Later she said it was quite something, confronting her own mortality. (Don't I know it!) Her surgery was more complicated than planned; the surgeon discovered things were much worse than expected, and the recovery was difficult. She went right home to bed after this show, and her recovery is continuing well.

Yeah, I'm proud of my sister. But more than that, I'm in awe. Because really, two days earlier we all didn't know if the show would even be possible. And she pulled together a masterpiece.

Her next show is in Annapolis on January 15, then Ogunquit, Maine on Valentine's weekend. Ticket info on her schedule page. Here's hoping that future shows include more of this newly discovered gem side of her - the softer side of Suede.

Laurel & Hardy meet Santana: a mashup

In my speeches about transforming healthcare I sometimes speak about mashups: combining several things that were created without knowledge of each other, creating something new. One example is satellite navigation systems in our cars: when those GPS (global positioning) satellites were shot up in the air, nobody had the idea of combining their data with street maps and combining that with way-finding software, to help us get from wherever-we-are to wherever-we-want-to-be. Mashups are one of the key methods of improving the value of things, especially on the internet.

In my talks I say that I can't wait to see what mashups will do for healthcare - but it all depends on the ability to move data between systems, so smart innovators can add value to it. If the data's in silos, mashups can't happen.

Well, there are other kinds of mashups. Here's one, courtesy of fellow kidney cancer patient and ACOR member Richard Catlett, via his Facebook page: Laurel and Hardy meet Santana - clearly two performances that were never destined to meet. Except on the internet. (Email subscribers, if you can't see the video, click here to come online and view it.)



p.s. This is my personal blog about healthcare issues. My business website and blog is ePatientDave.com.

US Military Pursues Patient Engagement

I had an amazing experience last Thursday. I encountered some of the smartest, fastest-thinking, most motivated healthcare transformation thinkers I've ever seen. The ideas were flying so fast it was like transformation popcorn. And this was in an organization I'd never heard discussed as health leaders: a U.S. Army "Physician Champions" meeting in Boston.

The people I met with have a particularly passionate commitment to effective care: having chosen the military themselves (not the world's best working conditions), they're distinctively committed to their patients. They have a long-running EMR system (electronic medical record), so that any "doc" who encounters a patient can see what previous providers have entered. And because of frontline military circumstances (at the front, a medic is the one you call "doc"), the records are used by all tiers of providers. In these conditions the value of accurate information is acutely apparent - as are the challenges of system usability and workflow.

The event leaders who invited me to speak were as passionate about patient engagement as anyone I've met anywhere. I spoke about participatory medicine, and heard discussions of real-world workflow issues and best practices for working with the system to get the job done. It was concrete and practical.

I had a strong sense that U.S. hospitals will have lots of meetings like this in the next few years as they implement EMRs.

I wondered why in all our civilian discussions of EMR I haven't heard of this group of change leaders. Sure, I've heard about the DOD's long-standing use of their medical record, and I know about the VA's system (which is not the same as DOD's). But I had no idea there was a group aggressively advocating for patient engagement in the military.

And to me that makes a ton of sense, because for the most part, when soldiers leave the service their medical record will no longer be visible to their new providers. They'll need to be engaged in their care.

My gratitude to Dr Bob Walker from the Europe Army Medical Command in Heidelberg and his team for introducing me to this special operation. Great people with an inspiring passion.

Vigil for Tyler Clementi and gay teen suicides

Last month Rutgers freshman Tyler Clementi was secretly observed, via webcam, in a sexual encounter with another man. The encounter was streamed over the internet and tweeted by his college roommate. On September 22 Tyler killed himself. (Wikipedia)

Readers of my book know that a powerful force in my cancer story was my sister Suede (website), a jazz and blues singer based in the Provincetown, Massachusetts area with a profound respect for human. Last Friday she participated in an impromptu vigil for Tyler and the four other gay teens in the U.S. who reportedly killed themselves in September.

Here's an informal video of the vigil. Suede is briefly seen in the beginning, as she sings John Calvi's "The Ones Who Aren't Here," from her first album. The song was written about and recorded during the worst of the AIDS epidemic. The quality's not great - Suede was standing on a park bench, playing through a battery powered amp - but the message is authentic. The speaker is Suede's friend Bradley, who organized the gathering.



(Email subscribers, if you can't see the video, click here.)

I ask that we honor humanity in all its diversity and variation, and that we teach our youngsters, even rambunctious teens, to do the same. This is no joke.

MITSS seeks HOPE Award Nominations

Do you know someone, patient or professional, who's been involved with medical error and has responded to it in a powerful, productive way? Please nominate them for this award.

MITSS is a tiny, wonderful, much-needed organization that does good work in an important area we hardly ever hear about: they provide services for people traumatized by medical error. And that includes both the patient/family part of it, and the clinicians who made the mistake. I first wrote about them last fall on e-patients.net, then attended their annual fundraising dinner. At this year's dinner, November 4, I have the honor of delivering the opening remarks.

Nominees are open, through 9/15, for their annual HOPE award. I lifted this from Paul Levy's blog:

MITSS HOPE Award Nomination Deadline -- September 15, 2010

The deadline for sending in your nomination for the 2010 MITSS HOPE Award is fast approaching. Take the time to nominate an individual, organization, department, or group that is doing great work aligned with the MITSS mission of Supporting Healing and Restoring Hope to patients, families, and clinicians impacted by adverse medical events.

Along with the national and international recognition that this prestigious award affords, the winner will receive a $5,000 cash prize that has been provided by the award sponsor, rL Solutions.

Go here for award criteria, an online nomination form, award history, past winners, and more! Nominating someone is easy, and submissions are done entirely online. Remember, too, that self-nominations are acceptable. Contact Winnie Tobin at (617) 232-0090 if you have any questions.

ABOUT MITSS: Medically Induced Trauma Support Services (MITSS), Inc. is a non-profit 501(c)(3) organization headquartered in Chestnut Hill, MA, whose mission is "To Support Healing and Restore Hope" to patients, families, and clinicians whose lives have impacted by medical errors and adverse medical events.