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.

My review of Elizabeth Cohen's book "The Empowered Patient"

This month CNN Senior Medical Correspondent Elizabeth Cohen released her first book, The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time. I got an advance review copy, and it's taken me this long to figure out how to express my thoughts. I just posted this review on Amazon.
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I've always been an empowered patient, so I didn't need to be sold on the concept. I'm a cancer-beating patient blogger, I'm co-chair of a medical society about doctor-patient partnerships, and I wrote my own book. So my question was, what does this book bring that's new?

What it brings is convincing stories, clear explanations, and concrete how-to's. It's short, comprehensive, and convincing. I don't see how you can NOT read it if you're responsible for someone's care, including your own. It awakens you to possibilities and risks, leaving you aware and enabled.

(Disclosure: Cohen wrote a quote for the jacket of my book, which is selling a million times slower than hers. But her view is different from mine. I've worked for weeks figuring out how to express the differences here.)

I'll start with the author's challenge, then how she handles it, then my objections.

The first big challenge for an author in this space is that *people tend not to care* about quality until trouble hits. And when it does, there's an instinct to not rock the boat: people want to stay put, to believe they're getting the best care possible. It's not rational, but I've seen it repeatedly: people are loathe to step out of the boat they're in, especially in troubled waters.

It's hard to hear that care might fall short, but it can. And there are many causes: human fraillties, lagging technology, information overload, even business ethics.

And here's the author's dilemma: the better you prove this with story after story, the more readers might feel powerless and turn away.

So how do you reach people?

This is where Cohen's mass media skills come in. She knows how to tell a story concisely, dip into the underlying reasons, and come back up with some concrete "Here's what to do's." There's an art to this: her own stories about her baby and her mother sometimes brought me to tears, but I wasn't turned away as I sometimes am. I was left feeling *this stuff matters*, and patients can help. By wising up, thinking for themselves, and speaking up.

Objections: if Amazon had a 100-point scale I'd give it a 95, not 100. First, a stylistic nit: it's obviously written by a TV person. Time after time she injects, "Coming up, I'll tell you how you can xyz"; I could almost hear "...right after this message." But people who think "She can't be serious, she's on TV" are wrong: every one of her anecdotes rings true, based on the many people I've met at conferences, and almost all her "What you can do's" are spot-on.

I agree with Mack90's comment that dot-gov sites are not quite as valuable or perfect as the book suggests: they can lag behind or be editorially skewed, no guarantee of "bestness." I've seen plenty of outdated information about my own disease (kidney cancer) on sites that match her recommendations, including sites with seals such as HON. But I don't feel as strongly about this as Mack90 does.

Finally, I object pretty strenuously to the title of the opening chapter: "How to be a `bad' patient." I'm clear that Cohen's intent (as she said yesterday in the New York Times) was to reach people where they are - speaking into the mindset of the mass market she talks to professionally, where many people feel it's not good (or even safe) to question one's doctor. I get the point, but I would have preferred to word it "It's *OK* to be a `bad' patient." In my view, "how to be bad" is a rough start for a book about empowerment.

But that brings me back to the top: this book brings mass-market communication skills to an area where many of us have worked hard to wake people up. Our books have contained much more information from different angles, but this could be the breakthrough that opens millions of minds.

An interlude for laughter, the best medicine

I used laughter when facing my cancer, then put it in the title of my book.

This is from Uncle Sandy in Atlanta. Get ready.



(Email subscribers, if you can't see the video, click the headline to view it online.)

"Compliance: It's Not Just for Patients Anymore."

I'm in a patient safety workshop in Boston today, about engaging minorities in safer care. We just saw a video about safety awareness, encouraging patients to realize what a good role they can play in helping clinicians (doctors and nurses) get everything right. (Long story short, there are many many ways that things can and do go wrong - some complicated, some simple.)

When people talk about making healthcare more effective, "compliance" often comes up. It's usually about whether you and I take our pills, improve our diet, etc. Patient compliance is a hot topic on blogs: Google shows 93,000 blog posts, and 9,000 in the past year.

But the video made a thought come up: holy cow, a lot of healthcare quality issues are because clinicians forget to fulfill their part of the plan. Ironic! But fault-finding finger-pointing doesn't produce behavior change as well as inspiration does - calling forth what people know to be the best in themselves. Here's a draft of a message we might want to spread - feel free to share:

"Compliance: It's Not Just for Patients Anymore."

We all know about patient compliance: whether patients follow our instructions to accomplish good care. When compliance falls short, our profession is undermined. Care suffers, and our efforts are frustrated.

The same is true when we don't comply with our part. Whether it's hand washing or the Five Rights of administering medications, any shortfall cheats the profession as well as the patient. And perhaps our diligence - or lack of it - even rubs off on patients.

Compliance isn't just for patients anymore. Let's not cut corners. Let's set a great example for every patient, and stick to the plan.

^{This text authored by "e-Patient Dave" deBronkart. May be posted & shared freely with this attribution intact (Creative Commons Share-Alike 3.0)}

Additional resources:

• The safety awareness video is in this e-patients.net post.
• MITSS, the sponsor of this workshop, is here.
• The "five rights of medication administration" are:
  
  • The right patient (this is why they constantly ask your name and date of birth)
  • The right drug (medications too often get mixed up)
  • The right dose (Dennis Quaid's newborn twins famously almost died because two bottles of medication looked too similar though one was 1,000 times stronger)
  • The right time (4x/day, before meals, etc)
  • The right route (pill vs IV, etc)
  
  

Are you happy about why you're here? Are you free to be?

TED talk by Elizabeth Gilbert. Love this quote:

"Is it rational, is it logical, that anybody should be expected to be afraid of the work that they feel they were put on this earth to do?"



I'm posting it because the work I'm doing now is so fabulous, such a self-expression, that I get what she means. As it says on my business website, “This is the first time in my life I’ve felt I have a calling,” says Dave, “something I can’t get away from: it’s what I need to do. I’ve had plenty of fulfilling jobs in a great career, but not a calling. This is it.” And I think everyone should be on the lookout for what calls to them - like the muse she describes that flew into Tom Waits's head while he was driving, or the one that pulled the poet home to grab a pencil and pull that verse out of the air. Backwards, if necessary, as it tried to get away.

I know the feeling described in this talk, of a message coming through me, in a way that I just grab as it goes past. And when I speak, I just say what apparently is waiting to be said.

I'm going to watch this over and over. Thanks for the support you all give me, and special thanks to high school classmate Susan Alnes for steering me to this.

What's new in the new life of e-Patient Dave

A phone call today made me realize it's been ages since I've updated loyal readers with what's going on. It's been a busy and wonderful time. My business website is ePatientDave.com, with pages for various goings-on:

• The big news is that my book was released a month ago: Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it).
  • Here's the listing on Amazon, and reader reviews. (Conference producers, visit my contact page to ask about bulk purchases.)
  • Here's the listing on Amazon UK.
  • Here's the book's website. (At present it's a subset of my larger website; soon it will have its own.)
  • The advance praise has been inspiring.


• I've traveled a lot in recent months, speaking, attending policy meetings in DC, and meeting with people doing good work in healthcare. My schedule page is here.
• One of my favorites is that in October I'll be attending the fabulous TEDMED conference in San Diego, serving as an analyst for the Robert Wood Johnson Foundation. These are truly wonderful people with [big] fingers in many great healthcare projects, including Aligning Forces for Quality - a multiyear project that's already developing great data on how we can do healthcare better.

There's more; explore my website, or heck, just google "e-Patient Dave." :–) As I say, it's been busy and wonderful.

I'm particularly grateful to Klick Pharma, my client who produced the superb short version of my long story, which I posted here in June. They're exquisitely skilled, they really get it about patient engagement, and they're carrying the message forward skillfully.

Thanks to all of you who've been so supportive and encouraging - especially you who've provided paying work, to keep this "project" alive. Here's to better health for all!