The New Life of e-Patient Dave

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

2011-08-28T20:26:00.029-04:00

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"

2011-03-09T19:55:00.007-05:00

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.

2011-01-22T19:01:00.005-05:00

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?

2011-01-17T18:09:00.009-05:00

^{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

2011-01-09T18:52:00.013-05:00

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

2011-01-05T11:24:00.017-05:00

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

2010-11-19T18:10:00.006-05:00

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

2010-10-05T22:39:00.001-04:00

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

2010-10-04T21:32:00.004-04:00

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

2010-09-11T08:19:00.002-04:00

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"

2010-08-30T07:00:00.000-04:00

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

2010-08-29T11:24:00.003-04:00

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."

2010-08-28T12:03:00.003-04:00

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?

2010-08-13T12:03:00.006-04:00

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

2010-08-04T21:11:00.006-04:00

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!

Boston Globe notices my fabulous singer sister Suede! Cape Cod Jazz Festival, tonight

2010-07-21T09:34:00.005-04:00

Long-time readers of this blog - and readers of my book(!) - know that a powerful force in my disease process was my Cape Cod jazz/blues singer, Suede. A totally self-supporting independent musician for years, today she finally burst onto the pages of "g," the Boston Globe's daily magazine of entertainment and diversion.

Writer June Wulff seems to have newly discovered my baby sister, but she totally gets it: "Watch out ... oy, we're in love with this talented lady." Couldn't have said it better myself!

One night only, at the Cape Cod Jazz Festival in Chatham, MA.

And it's FREE! (Usually a Suede ticket is $20-60.) FREE!

Kids are invited to say what THEY want from next-generation healthcare (free webcast)

2010-07-07T17:31:00.002-04:00

I know this is last-minute but we/they don't have many registrations. If you know a kid, age 5 to anything, who's free Thursday afternoon July 8, join this free webcast. It's from 2:00-5:00 Eastern, and it's fine to attend for part of the event.

The webcast series: "Person Centered Health."

This is a great group of people, mostly in Canada, whom I met through my primary physician, Dr. Danny Sands. Why "person centered" instead of patient centered? Because they're way outside the box where most of us live; to them healthcare is not just part of good health, it's part of a good life. (I gave a brief glimpse of it last month, after speaking at a Toronto meeting.)

They run a monthly webinar that's unlike anything I've seen. It's a free live Webex event, which you can join by phone like a usual Webex. Or, if you're near a Cisco office (they own Webex), you can participate using their incredible "Telepresence" room, with life-size monitors. I participated in one of these, and it really is like being in a room with the people in other cities. It's nothing like Skype video.

In either case, you can register here. Now for the good stuff:

This session:

At the last session, even these out-there thinkers felt cramped, and wondered: What if we got some kids in here and asked them what they think? So at tomorrow's session, kids are invited to speak up. (I apologize for the late notice but I just realized yesterday that there's been little promotion and only two kids have registered so far.)

Organizer Wayne Mills writes this description:

As you know, Person Centered Health is a journey. In the past few months we’ve had some excellent speakers give us their perspective in how to enable PCH from a policy stand point, from an operation stand point, from a patient standpoint. One critical group we have yet to hear from is the people whom will have to ensure Person Centered Health is delivered in the future.

Therefore for our next session scheduled for July 8th at 2 PM Eastern time, we would like to invite young people. We would like to learn how do they see participating in their own healthcare system? Are they going to participate in the same format as we are (i.e. agree to have a wait time in their healthcare system) or are they going to create their own systems via social networking, etc? What changes would tomorrow’s leader's demand from today’s system?

Again, register here. It's even okay to register and join after the session starts. What's important is participation.

I used to hate Thunderbird. Is it better now?

2010-07-06T14:07:00.006-04:00

This post is for people who've used the Mozilla Thunderbird email program, and are fairly demanding. Because I'm a demanding email user, and I'm considering Thunderbird.

But when I've tried it I've hated it, and I wonder if it's improved. A lot.

Background:

The other day I asked for help on improving my email situation. I got great advice, and I'll be moving to Google Apps, as several suggested. Tom Iglehart, co-chair of CCTWG, will help me with the move.

Here's the geek part: I currently use Outlook Express, but Tom points out that if I move to an app that supports IMAP, I'll be able to view all my emails (received and sent) from any device or any computer. (Why do I care? Among other things that will let my wife comb through email conversations about speaking engagements etc, which will take a big burden off my sole-proprietor plate. She's infinitely better than me at detail work.)

The best known app that supports IMAP is Outlook. I hate it. In my experience (three times over the years) it gets full and then it starts malfunctioning, and I'm not interested in putting in the effort to become expert at managing a dysfunctional program.

Several times I've tried using Mozilla Thunderbird instead. It was funky but okay, but there were infuriating limitations (really dumb missing features), which caused me every time to punt it and go back to Outlook, because my employer required it. Now that restriction's gone.

So I need to know, is Thunderbird a lot better than it used to be?

"Think About Your Life" patient-driven website

2010-07-02T16:08:00.003-04:00

I love this: a website that could ONLY have been created by cancer patients.

http://www.thinkaboutyourlife.org/

"Find empowerment: Anything you can do to feel like you are taking control of your illness and treatment will help you. Thinkaboutyourlife was developed by cancer survivors. We have used the tools on this website in our own experiences, and we hope to inspire you do the same.

This website provides easy to use tools for each stage of the cancer journey to help you:

Process your thoughts and feelings:
Elizabeth shared the "Good day, bad day" tool with her family to tell them how they could help her throughout treatment.

Take control and make decisions:
Amanda used her "One Page Profile" with her doctor to discuss the impact of treatment on her life.

Think about the "what now" and the "what next"
The "Hopes & Fears" tool helped Susan to think about the next few months of her life after treatment.

I learned about the site from its creator, Amanda George, who commented on last month's post about person centered health. Hot diggety. Doncha just love how the internet is letting us connect with each other and share ideas??

I need a new email hosting company. Suggestions?

2010-07-02T15:11:00.003-04:00

This one's for people who know about how to host websites etc. I need a change.

For www.ePatientDave.com I'm using an inexpensive hosting company, GoDaddy, that has great customer service. I'm not thrilled by their using Danica Patrick as their spokesperson in a cheesy way, but I can tolerate it. They've got really good customer service: competent people on the phone with little or no hold time. Their technical web interface is a mess in my view, but they're willing to do everything for you over the phone.

I've registered my domain name with them, and my website lives on their computers. Other users have mentioned that their sites have gone down occasionally but it's working fine for me.

What's not working fine is the other service I buy from them: email hosting. The way they do it, my genuine emails look like spam or phishing to some filters - and that keeps me from reaching clients. Like, when I try to email anyone at the Mayo Clinic it gets rejected.

Another client, potentially my biggest ever, thought I had no interest. They called before giving up, and we discovered all 5 of my responses had gone into their spam folder for the same reason.

Here's the corker: when I called in to ask Godaddy about it, the well-meaning guy on the phone was naive enough to say, "Well, your email is legitimate - can't you tell the Mayo Clinic to change their security settings?"

Right. Uh-huh. No, I think it's time to get rid of you, Godaddy, and find a provider who understands email security issues.

Suggestions, anyone?

I'm willing to consider Gmail, but I don't know if it's industrial strength. Ideally I'd like a provider that lets me store virtually unlimited emails on the Web, so my staff can access them - but it's vital that I have a copy on my computer too, so I can read them offline.

Coverage of ePatient conference at the National Library of Medicine

2010-06-26T22:28:00.005-04:00

This spring I had the thrill and honor of being invited to speak at the National Library of Medicine in Bethesda, Maryland. Why? Because they actually had a conference about e-patients.

Yes, the U.S. National Library of Medicine, part of the National Institutes of Health, had an e-patient conference.

And they brought all the brass. Here's the inside front cover of the current issue of Medline Plus, their (free) magazine: (click to enlarge)

This was one of several times I found myself crossing paths recently with David Blumenthal. Funny, when he was a doctor at Mass. General I never saw him, but now I see him often.

The most fun was meeting Dr. Lindberg, quoted in the article. In every speech I cite something he said that's quoted in the e-Patient White Paper, about how impossible it is for doctors to keep up with the information explosion:

"If I read two journal articles every night, at the end of a year I'd be 400 years behind."

That's one of the most potent quotes to open people's minds to the power of activated, engaged, e-patients. Physicians are overloaded and have thousands of conditions to track; you and I only have our own conditions. They must go wide; we can go deep.

The really fun thing is this: sometimes a skeptic would question Dr. Lindberg's statistic, saying "That's not really true - it's probably different today." Well, now I can say "When I had dinner with Dr. Lindberg this spring, I asked him about that. He said it is different: it's much worse now."

Here's to e-patients - and here's to the amazing realization that these great academics are noticing!

It's my Drop Dead Date plus three years. Thppppt!

2010-06-26T12:56:00.007-04:00

Three years ago today was "razzberry day," aka Drop Dead Date. So, today on my CaringBridge journal I posted this picture.

Huh?? Patience, my lovelies; all shall be revealed:

At diagnosis on January 11, 2007 my median survival was 5.5 months, which predicted an "expiration date" of June 26. On that date all my buddies gathered at noon eastern time and blew razzberries (Bronx cheers) at Death as we zoomed past it and into the future.

Here's an email Mom sent yesterday to my siblings:

"Hi, all - Saturday, June 26 is the 3rd anniversary of Dave's beating his "Drop Dead Date" of the average 5.5 months survival time after diagnosis of his particular brand of cancer. I personally plan to give the razzberry salute at noon, again, to commemorate the day, and invite you to join me...

"He's at a conference in SC, home Sunday night; his book Laugh, Sing, and Eat Like a Pig is coming to Amazon SOON. I've spent the past few days doing a bit of proofing for him, and reliving the story; some tears, some giggles, lots of strong reminders of how and where we all were 3 years ago, dealing with HIS cancer, each in our own way. And the book also has much of where he's been since then... I'll (personally) make sure you each get a copy when it's published. My treat, though Dave may have had that thought already. If so, I win because I'm the mother and I said so..."

Dat's my mom - and you're my razzbuddies. Life is crazy good!

A vision of people-centered health

2010-06-17T23:12:00.002-04:00

Heads-up, people - this is somethin' good.

I was invited to speak today at a meeting on "Patient-Centered Health" sponsored by the Ontario Hospital Association. I was followed to the stage by Vaughan Glover, author of Journey to Wellness, a 2005 book with a terrific vision of healthcare in which patients are truly responsible for the state of healthcare.

I hope to write more about it later, but for now just savor this quote from the back cover:

"We, the patients, must lead the way in building the next generation of health care in our country. The change will be driven by an informed and empowered public, demanding access to what is possible rather than what a government or any other support group is willing or able to provide."

How could I not have met this guy before?? Glad I did.

When BP spills coffee

2010-06-10T07:49:00.002-04:00

From the Upright Citizens Brigade comedy site, UCBComedy.com:

(Thanks to Paul Levy for tweeting this.)

Seven minutes of an engaged patient's story

2010-06-06T09:50:00.007-04:00

One of my clients is Klick Pharma, a Toronto marketing firm that creates superb websites to help patients be engaged in their care. They're real professionals in all the domains of their work: human interaction (how people use a website), messaging (the way concepts are delivered in words), and every aspect of production.

This spring they invited me to their video studio to record an informal chat version of my story, highlighting the ways patients use the internet to alter how they deal with disease. We spent several hours, and they did a terrific job of editing it down into something coherent.

(Email subscribes - if you can't see the video, click the headline to view the post online.)

The same video is on Klick's site here. Also on that site is a video of a talk I gave with Klick's Brian O'Donnell at a conference in Philadelphia. Most people in pharma marketing talk about the medication itself (in one way or another); Klick's approach is to support the patient in much broader ways - "Beyond the Pill," which is the title of the talk.

My segment starts at about 9 minutes. Thanks to Klick for their patient-centered approach, their competence, and for being a client of mine (in that order).

Urgent call for help - rare pediatric side effect of dialysis

2010-05-26T05:53:00.002-04:00

My social media friend Dale Ann Micalizzi sends an urgent call for help. A 3 year old's life seems to be in imminent danger

I need help for a family that I'm working with from a pediatric nephrologist specializing in dialysis where child is having a rare side effect that no one seems to have heard of before. Please email me if you know of someone willing to talk w/family or PICU or answer a few questions for me.
...

Because of this flesh eating infection, he lost all kidney function and is on dialysis. The entire doc team never heard of the reaction that he's having to the dialysis. His face turns red, he screams the entire 2 hours even though he's on high power narcotics. His heart rate races to almost 200 and becomes tachycardic and his BP drops. If you could ask your nephrology friends if they have ever heard of such a thing and what they could do to relieve his pain or if anyone would be willing to talk with the Mom so that she could feel that she tried everything to save him?

More information is in this newspaper story. (Caution - some specifics are unbearable to read, and the important info is above.)

Because time is short and I'm overseas (not online constantly) please email Dale directly: micalizzidag at AOL. Or if you know of a specialist with info, they can contact the hospital directly - the main number is 518-262-3125. The family's name is in the newspaper story.

Leonard Cohen's "Hallelujah" as sung by my sister

2010-05-20T19:10:00.004-04:00

When I was in college in Boston, Canadian singer-songwriter Leonard Cohen was a big deal. His dark, pensive voice and poetic lyrics set him apart from much of Sixties music.

His best-known song then was "Suzanne," but Wikipedia says in recent years it's been surpassed by his 1984 "Hallelujah." I'd never heard it until, at my sister Suede's recent concert at Boston's Sculler's Jazz Club, she pulled it out (total surprise to me) and rendered a beautiful, spiritual six minute version of it.

Suede is much loved on Cape Cod, and she sang it at an annual spring bonfire, another much-loved occasion. Perfect.

CaringBridge testimonial video

2010-05-17T23:10:00.007-04:00

Last week I wrote about my visit to CaringBridge headquarters. The night before I had an idea - why not pull out a camcorder and record an impromptu testimonial? I've been doing some video interviews lately, and they come out okay; why not give a big thank-you to the website that meant so much to me, and to my community, during my illness?

I was tired (not enough sleep that intense week!), so I was a little hoarse, but here it is. Heartfelt.

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

I encourage you to send a donation to CaringBridge, small, large, or tiny. It's a darn good service, and they offer it free to anyone. And at a time of crisis, that's a big deal. You can help make it possible for more people.

"The poster child for patient empowerment" - Mpls Star Tribune

2010-05-14T09:55:00.005-04:00

Well THIS is fun.

Last week I gave the keynote address at the 13th annual ICSI / IHI Colloquium - an audience of 500+ physicians, hospital administrators, health plan (insurance) executives, all focused on doing healthcare better. ICSI is forward-thinking and Minnesota-based (not surprisingly - MN is a long-time leader of better health practices), and is finally starting to get recognition outside the state. Attendance in the past has always been around 300, so it's good to see it growing.

In the audience was Maura Lerner, a health reporter for the Star Tribune. We talked afterward, and she wrote a long, great piece that was on the front page of today's paper. A few details of my story are a little off, but she completely got the message right regarding patients being engaged in their health, as effective partners of their physicians.

They wanted a photo, so they came with me the next day when I visited the headquarters of CaringBridge, the wonderful website I used to communicate with family and friends during my illness. This photo is from the tour I was given by Sami Pelton, their director of partnerships. (That's her.)

______

Update 5/17: During the visit I recorded an off-the-cuff testimonial video for them. It's in my next post.

Book launch and jazz show April 22, Boston!

2010-04-16T08:36:00.019-04:00

I have exciting news and an invitation to all of Boston: Please rearrange your life and join me, Thursday night at Scullers Jazz Club!

The news: I’m announcing my first book. It'll be out in June. Cover art is at left.

It's my story then and now: excerpts from my online CaringBridge journal, interwoven with what I’ve since learned about e-patients and participatory medicine.

The title reflects the mind-powered approach I took to my “prognosis is grim” disease. (More on this below.)

The invitation is for all of New England to come celebrate and honor a singer who was a huge, powerful force during the course of the disease: my sister Suede. (Yes, that’s her name.)

She’s performing Thursday, April 22 at Sculler’s Jazz Club in Boston. One show only. Tickets: http://www.scullersjazz.com/attractions/detail.htm?id=839

With four CDs and a live DVD to her credit, Suede is a self-made independent artist with a phenomenal stage presence. Be prepared to be owned by the diva for the entire evening. You’ll see what I mean.

All New England, please come join us! It’s a dual celebration – Suede rarely plays Boston (she’s more often found on Olivia Cruises), and I’ve never published a book. April 22, 8 pm. Best seats go to those who buy the dinner/show package.

Q & A follows. "Do it!," as Suede says during one of her songs. :-)

What’s the title about??

It's the approach I chose to take to the news that I had a lethal cancer - a summary of the advice I got in the first few weeks after diagnosis, before I even started my journal:

"Laugh" is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness
"Sing" is the advice my doctor gave. I had asked if I should drop out of my much-loved championship chorus to save energy, but he said, "You don't want to stop doing life activities that you love - it sends the wrong message." Wow. So, okay, laugh and sing! Not bad.
"Eat like a pig" refers to the diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.

Admittedly, "laugh, sing and eat like a pig" is not a conventional approach to a deadly diagnosis. But that's kind of the point. And the whole story is true, every word.

Why a book with this message?

4,000 people a day (in the US alone) discover they have cancer, and face that moment of "What on earth do I do NOW??" I know that feeling. Some look for what to do next; others don't even think they can do anything — they just think they're screwed and go into depression. This book is about hope, getting it in gear, and going "e." (E-patients are "empowered, engaged, equipped, enabled, and educated.")

What does Suede have to do with it?

"Laugh Sing" is about facing the unfaceable with power and grace, and nobody was a stronger influence than my sister Suede.

She taught me to have a powerful relationship to the disease (all explained in the book) and not be owned by it. She taught me what she learned about facing death from her years working with patients in the AIDS epidemic. She brought people from her extraordinary fan base to join our support group on CaringBridge.

Most incredibly, she organized an impossible effort to solve another challenge I’ve rarely discussed: The whole time I was sick we owned an extra house.

We’d lived in the Midwest for a while before something told us we had to get home to New England. We put that house up for sale in 2006, just as the market hit the skids, though nobody knew it yet; we thought it would sell soon.

Then I found out I wasn’t getting the job that was 99% (not 100%) certain. So for months I owned two houses with no income. I found a job. And three months later I learned I had Stage IV cancer.

The value of both houses started dropping. 30%, eventually. So, while I was sick we also had carrying costs for two houses on a one-house budget. And not even any showings on the old house. It felt crushing, but we were focused on just staying alive. First things first.

Then, we got an offer. For $18,000 less than we owed.

What did Suede do? She organized an incredible campaign and put on a benefit concert – she and her community raised the $18,000. So, in September 2007 we sold that house and got the official word that I’d survived. It was a very good month.

Join us. Celebrate the book, Suede, and life!

You can see what a powerful, wonderful, amazing woman this soulful singer is. She will own you for that evening.

At the benefit concert my physician Dr. Danny Sands and wife Libby came to the first half of the show. He was blown away: at halftime they were trying to decide which CDs to buy, and they decided they had to stay for the second half to hear more songs.

That's how good she is. (He later said “We came for you, but we stayed for Suede.”)

Let’s sell out the house! Bring friends! Rearrange your life for this rare show - buy tickets. Celebrate life!

When I Leave the World Behind

2010-04-11T13:54:00.007-04:00

Work is underway on a book I promised several years ago to write. It’s extracts from my cancer journal on CaringBridge - the cancer story itself, and how I used everything at my disposal to help my cause: the internet, great medical care, and the power of attitude. Woven throughout are observations on how e-patient principles are changing the process of disease (and health). At the time I’d never heard of an “e-patient,” but what my support community and I were doing exemplified it.

The book's work is being driven by my long-time associate George Alexander, who is also the publisher.

It’s been emotionally hard to dig back through those journal posts, because those were scary times. The chapter I’m working on now is about hope, so yesterday I read Jerome Groopman’s book The Anatomy of Hope. It's filled with stories of being with patients as they faced probable death, and the physician’s journey of learning to help them deal with it.

I cried as I recalled facing my own death. It was accentuated by recent events:

Fellow kidney cancer patient Rick Schleider died last month.
My classmate Don Levinstone lost his fight with pervasive lung cancer last month.
Last week my dear singer-sister Suede's longtime companion dog Angel died. Angel was a miracle dog, an abused stray who lived on a highway median for months before being rescued. Suede adopted her and gave her a life she never would have known. The loss is hard on her.
Today’s CBS Sunday Morning had a segment on children who lose a parent. (5% do, before age 15.) The family photos and the footage of the children’s words, their loss, brought me back to the thought of leaving my family behind.

And that brought me back to my own father’s death in 2005, when I lived a thousand miles away. Traveling to see him wasn’t easy. The last time I left him in the care facility I said I’d be back soon and kissed his forehead. His last words to me were “That will be nice.” All signs were that the end was near, and it was.

That night I attended the annual concert of my sister Amy’s excellent Sweet Adelines chorus The Pride of Baltimore. The headline act was Wheelhouse, a champion quartet whose signature song is When I Leave the World Behind. Irving Berlin's beautiful lyrics flooded me; I sat there with tears running down my face, thinking of my dad's departure from this world.

Today that song came back to me as I heard the children talk. I found Wheelhouse's performance on YouTube, and found myself sobbing with feelings I hadn’t touched in three years, a much needed catharsis.

Here it is; the lyrics are below. (This handheld video is shaky at first but it settles down.)

When I Leave the World Behind
Irving Berlin, 1915

I know a millionaire
Who's burdened down with care
A load is on his mind
He's thinking of the day
When he must pass away
And leave his wealth behind
I haven't any gold
To leave when I grow old
Somehow it passed me by
I'm very poor but still
I'll leave a precious will
When I must say good-bye

[Refrain:]
I'll leave the sunshine to the flowers
I'll leave the springtime to the trees

And to the old folks, I'll leave the mem'ries
Of a baby upon their knees

I'll leave the night time to the dreamers
I'll leave the songbirds to the blind

I'll leave the moon above
To those in love
When I leave the world behind

[2nd verse:]
To every wrinkled face
I'll leave a fireplace
To paint their fav'rite scene
Within the golden rays
Scenes of their childhood days
When they were sweet sixteen
I'll leave them each a song
To sing the whole day long
As toward the end they plod
To ev'ry broken heart
With sorrow torn apart
I'll leave the love of God

[Refrain:]
I'll leave the sunshine to the flowers
I'll leave the springtime to the trees

And to the old folks, I'll leave the mem'ries
Of a baby upon their knees

I'll leave the night time to the dreamers
I'll leave the songbirds to the blind

I'll leave the moon above
To those in love
When I leave
the world
behind

I’m so glad to still be alive, alive to keep loving those things for a few more years. Thanks to all of you who were with me then, and thanks to all of you who work today to make a world of better healthcare.

TED talk: Intel's Eric Dishman: Take health care off the mainframe

2010-03-28T17:49:00.005-04:00

Intel (the computer chip maker) is big into healthcare these days. A lot of people wonder what computer chips have to do with healthcare. At one level you could say that when we all have home health devices, millions more chips will be sold. But as you're about to see, there's a lot more to Intel's thinking than that.

Eric Dishman is director of health innovation and policy for Intel’s Digital Health Group. They're not just talking about what we mean by healthcare today - they're talking about a very, very different approach to what medicine today tries to solve: living better, living longer.

Best License Plate of the Month

2010-03-22T23:04:00.003-04:00

Spotted today by daughter Lindsey. Who rocks, btw.

(The first letter is a Q, in case you can't tell.)

Adding the Odiogo blog post reader

2010-03-20T07:37:00.002-04:00

I've just added something to this blog that I've seen for years elsewhere: the Odiogo "Voice your content" plugin. Click the "Listen now" button at the top of any post and it'll read it to you.

Pretty amazing, for free. To tell the truth, though I've seen it for years, I've never quite believed it. But it works. :-)

Thanks to two perennial leaders for being the bloggers where I've noticed it:

Jen McCabe of Health Management RX. (Read her still-extraordinary "I am an e-patient" post from 2008
Brian Ahier of Healthcare, Technology and Government 2.0. Brian is one of the most down-to-earth, "What makes a difference here?" bloggers in health IT. So it's not surprising that last night when I was looking for a good summary of the current health overhaul bill, I found it on his blog. (It's the second document listed in the post.)

That post on Brian's blog is where I found Odiogo again.

Lean retreat, day 5: Reporting to leadership, taking it back to gemba

2010-03-12T13:56:00.001-05:00

Here's our class photo. A whole bunch of inspiring residents, some attendings (full doctors, I believe?), some nurses, and a couple of patients:

Today we reported to leadership on the process we'd gone through. One of Lean's principles is to ask the experts, and if you've been paying attention you know that in Lean the experts are the ones who do the work. So after introductions, the presentation was delivered by us - the students.

Of course, this being a major teaching hospital, the leadership provided some, ahem, clear feedback. :-) But this hospital being a great place, the "clear feedback" was delivered respectfully and with good, open dialog.

A big part of our thinking today was about taking it back to gemba - the workplace. Anyone who reads Dilbert knows that too often a retreat like this ends up as an impotent misfire. So our leaders Alice Lee and Julius Yang MD led discussion of how we'll work at bringing these changes to life, while fitting the work into everyone's full workday. I look forward to seeing how it goes.

I pointed out that this process of building bridges, from the "decision room" into the next step, parallels the work we did on the patient discharge process: building a bridge from the staff's intentions out to the patient's home. Without that work, handoffs of either type are unlikely to bear fruit.
__________

I want to say again what a great experience it is to be actively engaged in the process of improving care delivery at my hospital. I know patient engagement isn't new; I'm just so happy to be involved in this way. Believe me, I was a full and active participant, and I wasn't just "surveyed" and sent packing, I was part of the team. What a great experience. And what fun!

Lean retreat, day 4: Synchronize / align, and the House of Lean

2010-03-11T16:23:00.012-05:00

Yesterday was hard work, because we stepped out of "supposedly" and into "Okay, what CAN we accomplish in 3-6 months?" Because Lean isn't about massive centralized re-engineering, it's about small practical improvements - continuously.

Today we took the results of that work and honed it down to small projects that the hospital will actually pursue. (I didn't realize that when the week started.) The day's byword was "synchronize," not in the time-sync sense, but in the sense of getting aligned and coordinated, rowing in a common direction.

We brought together our different learnings from the week into an action plan that fits into the "house of lean" diagram we started with on Monday. I didn't grab a snapshot of it then, but here's today's hand-drawn reconstruction. See legend below.

The foundation has three layers:

Stability: You cannot improve steadily without a stable process. So, a lot of work goes into stabilizing how work is done. In any industry including healthcare this can require giving up a certain amount of craftsmanship - but in my view the predictable, repeatable part of the work is what gets stabilized, and craftsmanship moves out onto the frontiers, where it's most needed.
Standardization: As I described yesterday, this is about having a shared, continuously improved, agreed approach to the parts of the work that can be standardized.
"Kaizen mindset": Kaizen is continuous small improvements: every day do something a little bit better.

On this foundation stand two parallel pillars:

Flow: a hallmark of Lean is the idea that inventory and uneven workflow are wasteful. When MIT Sloan's Mike Cusumano went to Japan in the 1980s to study Japan's car makers, he found that although they were all good, Toyota produced the same number of cars with half the floor space and half the people. That's because they managed every aspect of the process to produce steady flow.
Yes, inventory and uneven workload can be managed to a minimal state. And when that happens, all kinds of wasteful workarounds disappear.
Quality at the Source ("Jidoka"): in Lean it's absolute folly to achieve quality by manufacturing defective things and then spending labor to find the defects (inspection) and weed them out. Make everything in a quality fashion the first time.
This week I learned that a vast amount of time on a hospital floor is spent re-checking things because errors are so costly. To me, as someone from industry, this gives the lie to any healthcare executive who takes an arrogant position because of the supposed vast intellect of people in healthcare. I know healthcare executives are smart, but if they're not working on improving quality, they're guilty of ignoring existing knowledge from other disciplines. That's not scientific.

And the roof, the healthcare platform that's supported by the foundation and pillars, the "true north," is Patient Centered Care. In Lean healthcare, all the other activities are of value only to the extent that they carry this load.

There's another aspect - the center of this house - that doesn't appear in many diagrams of the "House of Lean," but was prominently taught to us today: human development. All lean practitioners talk about "respect for people" or "respect for humanity," but not everyone emphasizes it in this way, as the center of the House. The other day Lean Hospitals author Mark Graban described it to me as respect for human potential, and indeed one of the 8 forms of waste we were taught is "Unused Human Talent."

So you can imagine how pleased I was to be a voice of the patient in this exercise. Because as the week went on, I saw that when we clear out the clutter that keeps clinicians from doing their job, we make it easier for them to make the most of their talent. And by empowering patients and families to be active (participatory medicine), we make the most of their talent too.

What a thrill to be involved in this week. Thanks so much to Beth Israel Deaconess for inviting me and helping to make it possible.

Lean retreat, day 3: The Pig Game (learning about standardized work)

2010-03-10T20:26:00.005-05:00

Modern healthcare is complex, and managing complexity is no laughing matter: it can be life and death. (More on this below.) As always this leaves us with the question, what can we do that would make any difference? That's where Lean comes in.

One aspect of Lean is standardized work - where "standardized" means a shared and continuously improved standard approach. Physicians are given leeway to use their judgment, but all in the enterprise must agree that the right way is to agree on a method, all use it, all contribute their ideas for improvement. And track what works.

That's how we know, for instance, that the central line infection rate has dropped so dramatically, as I mentioned the other day.

Well, to teach us about standardized work, today we did a classic Lean exercise: the Pig Game. Everyone is given a "tic tac toe" grid, and instructions on what to draw. In round 1 everyone's pig comes out vastly different, though all had the same spoken instruction. In rounds 2 and 3 .... well, I won't spoil it, but I'll say that the same group of humans produced far more uniform results when the work was defined more effectively. :)
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This morning we heard from Steven J. Spear, author of Chasing the Rabbit. For homework we read chapters 2 and 3, which made a compelling case that in today's enterprises complexity is the rule and it's the thing that must be managed: no longer is it sufficient to be good at what each of us does - we must manage, together, the uncontrollably complex interaction between our areas of knowledge.

And yes, when I say "we," I'm including patients. I understand more clearly than ever why patients must be engaged in their care, in and out of the hospital. (Actually that's only true if they want the best possible outcome from their treatment. I do.)

The book relates a heart-rending story of a woman who was accidentally given the wrong fluid and died. I won't try to depict the circumstances because anything short of the whole story would give you the wrong impression; I'll just say that when I read it I cried, not just for the patient but for the nurse who did it. (Apparently the wrong tiny vial, looking almost identical, was in the cart.)

It was heart-rending, as I say; then he documents how very similar failures in process and policy led to NASA's Challenger disaster.
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The very first business transformation course I ever took, many years ago, was from a company named Innovation Associates. The course leaders were Charlie Siefert (coincidentally a fellow member of my college glee club) and Peter Senge, who has since become famous for the "Learning Organization" concept, about enterprises whose central competence is to learn new competences. In that course we were taught two fundamentals:

How to envison a future, unconstrained by current reality. Very right-brain.
System dynamics: an understanding of how complex systems work. Totally left-brain.

It was a full weekend, back and forth between the cerebral hemispheres. The climax was apocalyptic: on the last afternoon an exercise led us, unsuspecting, to a conclusion that's horrid to any engineer: you can't figure it all out. You have to think it out as best you can, start operating, and see how it goes, adjusting on the fly.

And since in a complex system problems are likely to arise no matter how much you plan, you need to be really honest about how it's going. It's truly inspiring to work with a group that's dedicated to improvement like this. (And producing great results.)
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And for the raw-business data junkies out there, here's today's Results Tidbit:

Yesterday I described how the Beth Israel Deaconess business transformation team worked with the orthopedics department. One outcome was a total rework of how hip replacement surgery was done. Not only did they improve quality, they can now schedule three total hip replacements per day, not two.

Yeah, folks, that's a 50% increase in business and better quality.

Lean retreat, day 2

2010-03-09T19:26:00.007-05:00

Previous post here

Continuing our exploration of how to reduce how many Medicare patients are readmitted after leaving the hospital, this morning we started getting our hands dirty, thinking out all the activities that take place - and can go wrong - when a patient is sent home.

Now, I have some experience with this, having been sent home seven times from my seven admissions in 2007, but I never had any idea how many things were going on behind the scenes. In particular I had no clue how often "final" paperwork (in the computer) had to get "unfinalized" and modified - and much how of a pain the computer systems make it. Plus, there are many many places where information can fall through the cracks, because this is all far less automated than I would have, naively, thought.

As always, the useful question quickly becomes, what can we do to improve this? It's no good ranting, because even a rant leaves you with this: "Okay, got it. Now: you're at where you're at. What can we do that will make any difference?"

And here's where it gets inspiring, because Lean has produced remarkable results without requiring vast new IT systems, and especially since its methods are well within the reach of ordinary people. For one thing, you don't have to figure it all out first - you think, and try things, and see what works. For another, today's eye-opening exercise was done with Post-Its, paper, and Sharpies.

More formally, "think, try, see what works" is called PDCA: Plan, Do, Check, Act [or Adjust]. It's really the scientific method applied to practical managerial problem solving. And it works. I've personally witnessed the transformation of the customer experience in this hospital's orthopedics department; when I first went there the wait was horrid (three hour visits were not unusual), and today people are in and out in 52-56 minutes - consistently.

This stuff works.

In the exercise pictured here, we mapped out four different stages of a patient being discharged, going home, and eventually returning to the clinic (doctor's office) for a follow-up visit. Apologies for the poor picture, but you can vaguely see "swim lanes" for the different people involved: the top row, with green Post-Its, is the patient; the row below is the case manager; other rows are the inpatient MD, the nurse, pharmacist, etc. All these people have specific responsibilities in discharging a patient. Each activity was written on a stickie. There were hundreds.

Then we went back and, as a group, looked at every single activity and marked it in the Lean way:

Value Added. (Is this specific activity something the customer came here for?) Getting instructions or therapy: yes. Waiting: no.
Not Value Added. Everything else: filling out paperwork, re-checking medication lists, paging the attending physician, you name it. Some might be necessary, but none of them is what the customer came here for. Lean strives to eliminate these.
Not Value Added, but Required. A subset of Not Value Added.

In principle all "Not Value Added / Not Required" items should be eliminated. But a vital part of the Lean method is that you start where you're at, try things, and improve incrementally. And even if you did eliminate all such things, you'd still continue making everything leaner and leaner.

Yellow and orange stickies, known as "stormclouds," were added, showing areas where things can go awry. Clusters indicate key areas to engineering reliability into the process.

Does it work? Heck yes: more data on that in tomorrow's installment.

Participating in my hospital's Lean quality improvement retreat

2010-03-08T21:20:00.010-05:00

I'm very, very honored to be indulging this week in a new form of "patient engagement": I'm participating in the annual "Lean" quality improvement retreat at my hospital, Boston's Beth Israel Deaconess Medical Center.

In the workshop with me are about 20 BID staffers - mostly residents, some nurses and other staff. Having been on the receiving end of care in seven admissions during my near-fatal 2007 illness, it's an honor to be behind the scenes now and helping work on the continuous improvement that's a hallmark of Lean.

Here's the team leading the workshop, from the hospital's Business Transformation team. From left: Jenine Davignon, Kim Eng, Julius Yang, Bonnie Baker, Alice Lee, Anjala Tess.

"Lean" is the methodology that's transformed many industries in recent decades. It's about identifying what you do that creates value for your customer - as defined by the customer - and eliminating everything you do that's not that. Marvelously, when you follow this method, not only does quality go up but costs go down, and things tend to get done faster, too - a pretty slick combination.

Hospital CEO Paul Levy has written often on his blog about how they've been applying Lean methods for five years. A recent example is here. In this workshop we're all learning about the Lean approach, and even on our first day we applied it by "going to gemba," the place where work happens.

Our homework is from the book Lean Hospitals by Mark Graban of the Lean Enterprise Institute in Cambridge. He was the guest lecturer during today's working lunch.

The focus of our workshop this week is the hospital discharge process. I never would have known it's such a big deal, but it turns out nationwide 20% of all patients discharged from hospitals are readmitted within a month - and Beth Israel Deaconess is a bit worse than that. So we'll be looking at all the various factors that might contribute to unsuccessful handoffs, and how process improvements might help.

This place has some success with Lean. One of the first big initiatives was to reduce the rate of central line infections. In January Paul announced that the infection rate per 1,000 patient days has dropped 83%. To me this is a big deal because:

25% of central line infections lead to death
During my treatment in 2007, I had four central lines put in, for a total of 28 days.

The hospital is open about this process - openly disclosing their failure rates and progress: (CL-BSI is central line blood stream infection.)

So before my admission I'd read all about this initiative, and I was able to chat about it with the surgeons each time they did it to me. And I was, like, really glad they'd undertaken this Lean improvement before my time came.

That kind of openness is only possible if you're committed to improvement, more than anything else.

That's part of why I'm honored and thrilled to be part of their next Lean workshop. So much in healthcare needs improving, and here we are, actively at work on making caregivers' jobs more effective.

Next post in the series here

Impromptu interview with the Get Better Health team

2010-03-06T16:18:00.005-05:00

This past week I attended the big annual convention of HIMSS, the Health Information Management Systems Society, in Atlanta. While there I was buttonholed by the famous Dr. Val Jones of Get Better Health to come talk on their live video stream. It's a fun thing - all you need is a webcam, and you can broadcast like this!

We talked a little about the show and then got into some (unexpectedly) sincere talk about what e-patient is and isn't, what participatory medicine is about, etc.

My host here was the anonymous doctor blogger Doctor Anonymous.

News for cancer patients: Attitude influences outcomes

2010-03-05T23:12:00.001-05:00

I've often described how when the odds were really poor, I used the power of the mind to help my own cause.I cited Norman Cousins' famous book Anatomy of an Illness, I asked my family to send me DVDs of things that make me laugh, and throughout my disease, when I or others were faced with worries, I asked "What could be said that would make a difference?"

I've cited that when Cousins wrote his book we didn't yet know about psychoneuroimmunology - the relatively new field of how mood affects the nervous system which affects the immune system. In other words, yeah, your mood can make you strong. (I'm not kidding; look it up.)

On Twitter today I came across a blog post about some evidence that people with optimistic personalities do better years later when lung cancer strikes.

534 lung cancer patients were selected who had, years earlier, taken the MMPI personality test.
They were divided into "pessimistic" and "non-pessimistic." The "non" group might include optimistics and neutrals - I don't know.
Their survival rates were monitored.

Results: Non-pessimists had ...

46% higher median survival than pessimists
55% higher 5 year survival

The effect was "independent of smoking status, cancer stage, treatment, comorbidities, age and gender."

So: Regardless of whether your medical condition is strong or not, this sounds like a heck of a good thing to add to your tactics. Doesn't cost much, either.

Presuming you want to live longer, that is. You don't have to. But if you do, think about it.

The original article appeared in the Journal of Thoracic Oncology. The summary that I read is on Medical News Today.

Interview with Pixels & Pills at the ePharma Summit

2010-02-16T17:37:00.000-05:00

Last week I was honored to be part of a presentation at the ePharma Summit in Philadelphia. I was sponsored by Klick!, a Toronto company I visited in December after meeting them at the ePatient Connections conference in October. I've seen a lot of Web 2.0 and Health 2.0 things over the years, and I was blown away by the instructional quality and the user experience of the websites Klick creates to engage consumers. And for their healthcare business, that means patients. Real "help you help yourself" sites.

At the session in Philadelphia, I spoke with Klick's Brian O'Donnell. His topic was "Value-Add Beyond the Pill," talking to pharma marketers about why and how they should engage with patient communities - adding value beyond just the medication they sell. During Brian's talk, I presented my first-hand experience as an engaged patient using the internet during my illness. (I hope video of that talk will be available.)

Afterward, I took my turn in the side room where Pixels&Pills (an online marketing agency) was doing live interviews. I was hoarse (still getting over a cold) but that never stopped me from talking.:)

What's all this about "patient is not a third person word"?
Say something about the new Society for Participatory Medicine and its Journal of Participatory Medicine.
What is the role of the physician in a world where patients are more involved in their care?
How can communication between patients and physicians be better fostered?
Are more and more patients really going online for medical information?

Thanks to Pixesl&Pills and again to Klick for this opportunity.

A dose of laughter medication

2010-02-16T15:58:00.003-05:00

I've written before about the medical and emotional value of laughing one's butt off. (Example from December here.) I hereby strongly endorse this particular formulation.

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

3 years ago I was out of time. Now I'm in it.

2010-01-28T23:32:00.002-05:00

Yesterday's edition of this had a wrong link. Apologies.

Three years ago this week I got my formal diagnosis. This week:

Last Sunday the New Hampshire Union Leader ran a story "What's next for health care" following the Massachusetts Senate election. For some reason, I'm happy to say, they led with my sentiment that I just want people to be able to get good care when they need it.

At the end of the interview I learned that the reporter's mother had died of cancer 5 years ago.

Then this piece appeared online today, for tomorrow's print edition of Time. Again somehow they put my story first.

Honestly I think what's doing this is that I always hammer on the point "This is personal. Your time will come." Don't I know it.

And, as fate would have it, this is happening unexpectedly in a week when I'm in DC, speaking at some conferences and meeting executives of non-profits. Yesterday I decided to visit my legislators' staff on Capitol Hill; I met with one yesterday and have appointments with the others tomorrow. AWFULLY convenient that I can have this publicity in hand when I walk in!

The universe works in mysterious ways. This time, I'll take it.

#GetUpAndMove, music, and "the fun theory"

2010-01-10T13:05:00.003-05:00

Twitter friend and outrageous visionary Jen McCabe is a brilliant thinker with a San Francisco startup company called "Get Up And Move." It's a free social media way of encouraging people to, well, get up and move. (Don't I love things that are exactly what they say?)

Its URL is the fun GetUpAndMove.Me, and its tagline is "Barter with Exercise." Go look at it. At present it's only tied in to Twitter (hashtag #getupandmove), but they're working on Facebook.

I've never been an exercise fiend, but GetUpAndMove has led to my discovering that I like doing a couple of minutes of exercise if I do it to a song. The radio site blip.fm has a ton of great songs (to play for free), so for instance if I agree to do a minute of pushups, I start one of my songs and do it. Examples:

Soul Sacrifice (Santana at Woodstock)
Little Deuce Coupe (Beach Boys)
Ecstatic R&B love song introduced to me long ago by friend Frank Moore: Don't Leave Me This Way - starts modest and builds. Great for jumping jacks
And my personal anthem: Play That Funky Music, White Boy

Today in the email from a chorus buddy I got this video, and realized this is what makes "GUAM" (as its fans call it) work for me, when so much hasn't: fun.

(I add music, but with or without it, there's the fun of challenging people, and publicly trash-talking your challenger or challengee.)

Here's to Jen, here's to Frank, here's to innovation, and here's to fun. Get up and move!

More on surgical options from my doctor

2009-12-29T17:47:00.003-05:00

Last May my urologist/surgeon, Dr. Andrew Wagner, graciously did an informal interview with me about surgical options for kidney cancer. That post is here.

People on my kidney cancer patient community on ACOR.org were recently discussing the different ways their surgery was done. I asked Dr. Wagner for his thoughts about "open" surgery vs laparoscopy (I had the latter), and he responded:

There are several options for open nephrectomy, some incisions removing portions of rib and some not.

All of the open options ("back or front or side or flank etc.") are generally decided on based on surgeon preference and training. For example I have a "go to" incision for open nephrectomy called a thoracoabdominal incision, it is a flank incision but extended to also open the diaphragm. This is a fairly common urologic incision for open kidney surgery.

I need to remove a piece of rib about half the time with this incision. I like this (rather large) incision because the only time I do open kidney surgery is if the tumor is very large or if the patient has had major abdominal or flank surgery already. In my opinion and experience, over 90% of kidney tumors should be able to be completed laparoscopically.

(reprinted with permission)

My hospital's renal tumor program web site, with contact info for the doctors, is at www.bidmc.org/renaltumor.

Meeting Dr. Amy Ship - "There's no billing code for compassion"

2009-12-22T16:22:00.006-05:00

Today I met Dr. Amy Ship, a primary care physician at Beth Israel Deaconess Medical Center, who was the recipient last month of the Compassionate Caregiver Award from the Kenneth B. Schwarz Center.

What a wonderful person. She's not involved in all the policy stuff, the "health 2.0" stuff, the "eHealth" stuff where I spend my time - she just wants to deliver care.

Amy and I were talking (very informally, like this incompetent informal photo :-)) about what we (all of us - that's you) can do to get everyone else out of the way so patients and clinicians can just do care.

One line in her acceptance speech: "There's no billing code for compassion." And that led to an idea.

We have an idea for a campaign to raise awareness about this. I'm sure somebody else has used this name, but to me it's about the doctor-patient relationship, so it should be called:

"Who Cares?"

Waddaya think?

Here's Amy's acceptance speech, which I first saw on Paul Levy's blog. It was so inspiring I called and dug her up. (Doncha just love how social media lets ideas spread??)

A celebration of you: please sign in

2009-12-21T18:50:00.002-05:00

To say the least, this has been an astounding year for me. It's not New Year's Eve yet, but I want to get started on remembering everything that's happened.

I can't begin to get a handle on the scads of people I've met this year, so I'd like to ask you to sign in, in a comment, and say hi!

You can read this retrospective if you want (this is only the posts on this blog, not e-patients.net) or just skip to the comments and say hi. I'll really appreciate it.
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On New Year's Day I posted about "Physicians as coaches, patients as players" - one of my most-quoted concepts since then. Participatory medicine!

In January I first heard of Jay Parkinson, then met him. In May he was in Fast Company's "Doctor of the Future" article; in September I was in Health Leaders "Patient of the Future" article; and today at my day job, we released a podcast interview with him.

In February I spoke at the TEPR+ medical records conference and discovered that doctors mainly hate the medical records systems that are available. They're overpriced and hard to use. I met many wonderful people there.

I also wrote my first post about the business of healthcare, "A Thousand Points of Pain," after realizing that with the massive amounts of money at stake in US healthcare, the money interests were going to fight tooth and nail to protect their stake. I said:

I'm starting to think that as patients, our fastest access to better solutions is to take matters into our own hands: use the Internet to gain access to information (and to each other) and create new tools of our own.

Let's get moving – let's show 'em how e-patients can git 'er done! Let's gather our facts, band together, create new tools, and spread the word to each other.

IBM picked it up and cross-posted it on their Smarter Planet blog.

It was also in February that I decided to transfer my personal health data to Google Health. And, separately, became co-chair of the Society for Participatory Medicine.

In March I created a video for my hospital and got to know the eminent David Kibbe, whom I'd met at TEPR+. I also pushed the button in PatientSite to move my data into Google Health, and was a little stunned by the result. I could have flamed, but I'm not the flamer type, so it took me weeks to figure out what to say. And on the night of March 31 I started writing.

In April I finished that post, and all hell sorta broke loose. On April 13 it was in the Boston Globe, a week later was the "Health 2.0 meets Ix" conference in Boston with lots of publicity and people from DC. Met a ton of people there - it was bizarre and fun having my "celebrity moment" - people in the hall saying "omg you're e-Patient Dave!" :-)

In May and June I didn't say much here; I attended three policy meetings in DC, and that was an amazing experience. Met a slew of wonderful people there, too. I also got to meet famous author/analyst Clay Christensen, and recorded my first podcast, interviewing my surgeon with questions from other patients in my ACOR community.... well, enough - let's get on with it. It's been an ASTOUNDING year. Sign in! Say hi!

Don't let the median scare you to death

2009-12-20T20:07:00.007-05:00

Further to Friday's post Advice to a Cancer Patient Facing News He Didn't Want:

One powerful factor in my case was the education I got about not putting too much meaning on the probabilities I read. They may be accurate but they're not useful to focus on, except as a motivator to get it in gear.

Here's more background on that, for people with varying appetites for math. Note: This isn't anti-science blather; it's scientifically valid. But often clinicians are taught not to give people "false hope" i.e. that they shouldn't get your hopes up "unrealistically." I understand that - it must be horrible to face a bereaved family, crying "But you told us there was hope." But frightening odds don't mean there's no hope; in fact it's unrealistic to think there's no hope.

The first thing to understand is "median survival time." The classic article about this is "The Median Isn't the Message," by famed Harvard author Stephen Jay Gould. The median is the statistic that's most often published about cancer survival, but it's not the whole story. Here's why.

The median is the middle number in a study. It tells you nothing about the other numbers. The others could be the same or vary vastly.

Example: let's say a study starts with 25 people who have a given condition. When the middle one (#13) dies, that's the median. Did everyone else die the same day? Can't tell. Did the others get completely better? Can't tell. You can't tell your personal odds by looking at the median.

Why do scientists publish the median? Because that's the first statistic they finish. They won't know the average survival until the last person dies, which may be never. And they'll never know yours.

As Gould says, "the median isn't the message."
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And here's where the rubber meets the road: when you're in a crisis, the most important flaw of medians is that the median gives you no useful information about what to do.

So yes, the median can tell you how bad it might be, and that may motivate you to get your butt in gear to improve your odds. But it's not the whole story. Don't let it scare you to death.
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p.s Another copy of that article was posted on the CancerGuide web site, which was handed coded by one of the most senior of all e-patients, Steve Dunn - a kidney cancer patient who founded the "KIDNEY-ONC" kidney cancer community that I used so heavily, on ACOR.org.

In his "Cancer Guide" Steve assembled a phenomenal set of empowering teaching tools about statistics. They're listed in the side menu on that ugly old website :-). If you want, read it.

My approach to life

2009-12-20T12:23:00.006-05:00

One of the pleasures of traveling to conferences, as I've done this past year, is meeting people "IRL" (in real life) whom I've only known online. One is Twitter buddy Steve Woodruff (@SWoodruff).

Today, with the big east coast snowstorm, he tweeted about this video - "19 seconds of pure joy." It's his year-old puppy's first snow play. As I watched (with joy), I realized it's pretty much my approach to life. :-)

If you can't see the video, click here.

And thanks to all of you who make it so!

Advice to a Cancer Patient Facing News He Didn't Want

2009-12-18T21:43:00.008-05:00

Recently an online friend from long ago introduced me to someone who's got a cancer case that's not going well, looking for any advice and counsel. He wrote today to a big cc list, with unfavorable news (I'm obscuring all details), and I replied.

In the email he expressed understandable concern about the next treatment, discussed his physician's news about the odds, and said he doesn't want to disappoint anyone. This is my response.

Note: I'm not saying anyone should be like me, nor that I'd say this to any other individual. This is just my response to this one person. I'm posting because I hope it will be of use to someone else someday - perhaps light a candle of hope and determination in someone.

________________

K,

This is not the news we want, but since H. introduced us (as we're both cancer patients) and you cc'd me on this, I'll presume you want feedback and here it is.

(Folks, this will be long, and blunt, so feel free to ignore it.)

First, I feel for you. I faced imminent death (median survival 24 weeks) three years ago so I know what it feels like. For my disease the web sites said "almost all patients are incurable," "prognosis is grim," "outlook is bleak." And I have friends who are still going through this all the time. Visited one today.

And, here I am three years later - my doctor's main advice after this year's physical was back to normal: I should start losing weight, like any middle aged schlumpf.

Remember, probabilities apply to populations, not individuals. Nobody knows what will happen to you, and anyone who says otherwise is lying. Something like 1% of all cancers disappear spontaneously, and science has no answer for that. (And I say that being trained as a scientist - MIT graduate and all that.)

Wisecrack: "Statistically, the average person has one ovary." Absolutely accurate - but it tells you nothing about any individual.

Second, I know first hand that the only useful approach is to find out what's so, find out what your options are, and ask "What's next?" Anxiety is understandable but it's useless. You can unlearn it: it helps nothing, consumes your energy and psyche, and actually weakens your immune system. You may want to get some advice or coaching or therapy or whatever in things like mindfulness, relaxation, or even one of Bernie Siegel's Exceptional Cancer Patient retreats http://www.ecap-online.org/ecap-retreats. My family was going to send me there but I went into treatment first and got better. If I were in your shoes today, I'd do it in an instant.

Two books I like: There's No Place Like Hope and Anticancer: A New Way of Life by an MD who twice beat an unbeatable cancer (brain cancer!), despite his own oncologists telling him it wasn't likely. You wanna be like him?? Sounds good.

Honestly I'm not sure your doctor did you a favor by emphasizing the negative. He may feel an obligation to tell you the odds (some docs are trained that way), but did he also spell out everything you can possibly do to improve those odds? THAT's what deserves your attention. You're already well aware that you might die - okay, so now what are the ways you can reduce that chance?

I'm dead serious about that. Been there, and that's the approach I took.

For instance, what have you been doing to make yourself laugh? Laughter's been proven to be good for the immune system. I had my family send me the whole first season of Saturday Night Live on DVD, and every Bugs Bunny cartoon ever recorded. What makes YOU giggle yourself silly? Are you doing it? (Even if you're dying you can have fun in the process!)

And just to be clear - if you die you won't "disappoint" anyone. Do NOT get into a head game of feeling guilty about having cancer! For heaven's sake. I think you need to get in touch with what YOU CARE ABOUT: say "I will never give up, because I care too much about all of you to say goodbye before I absolutely have to!" THAT is a reason to survive - not to "avoid being a disappointment."

You need to get in touch with why you WANT to be alive, and then do something about it. Even if the odds are bad, like mine were.

You might not survive. So get it in gear, if you want to.

I look forward to hearing YOU talk like this to someone a couple of years from now. :)

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Addendum Dec. 21: see also "Don't Let the Median Scare You to Death"
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Addendum Feb. 16: for a start, see Tim Conway's "Dentist" clip here. You might want to visit the bahthroom first.

What a headline to have in one's scrapbook

2009-12-09T20:40:00.000-05:00

This is the start of an item in today's Manchester Union Leader.

Yes, that's Dean Kamen, inventor of the Segway scooter. He's also the inventor of many medical devices that are making life better for a lot of people. And he and I are two of the "HealthLeaders 20" this year - "20 People Who Make Healthcare Better." My doctor Danny Sands, is another. We're there because of the Society for Participatory Medicine.

On my business website I acknowledge some of the many people who are making this happen:
Making Healthcare Better through Participatory Medicine

Thanks to friend John Peterson for letting me know about this in the Union Leader.

How to evaluate something like the mammography recommendations

2009-11-28T08:44:00.011-05:00

This is a long post because it's not a simple topic. Please don't jump to conclusions.

On the e-patients blog, Gilles Frydman, founder of ACOR, has written one of his potent deep-thinking posts. This time he reflects on how we (humanity) tend to get ourselves in trouble when we frame our thinking in terms of "war on..." It doesn't matter whether it's a skillful manipulation ("war on terror" / "Iraq - 9/11") or unintentional; fear comes from the more primal parts of the brain and can prevent that distinctly human skill, thinking.

This is adapted from a comment I posted.

--------

Before I start, let me say that I have not evaluated or even read the task force's recommendations. The instant I heard the public reaction I knew there was craziness in the air: insanity, reactions to things that weren't being said, hysteria. And I knew what I'd write about wouldn't be a thumbs-up-orodown post, but how to approach such a consideration as an informed, engaged e-patient.

What does this have to do with being an e-patient? Everything. It's increasingly clear that we can't rely on the establishment (political leaders and news media) to interpret science correctly. Gilles lays out the evidence for that well. We must learn to interpret evidence for ourselves.

_________________

1: The purpose of using statistics

Gilles, thanks for tying this to our previous posts on understanding statistics. PLEASE, people, read last November's short post on understanding statistics. And consider reading the excellent paper it links to.

Look at its incredible evidence that even physicians misinterpret statistics - the example on the second page is specifically about gynecologists being unable to correctly interpret mammography data, unless it's presented quite clearly. The point isn't that docs are dumb, it's that misinterpreted statistics lead to confused, botched conclusions.

See, the purpose of statistics is to improve our guesses when we don't have certainty. Use the tool correctly and it'll help; use it wrong and it'll drive you right off the road into a ditch.

Another example in that article is Rudy Giuliani's ignorant, erroneous comparison of apples-and-oranges prostate screening data from the US and UK - data collected under different circumstances in different environments at different times in life. The reality is that prostate mortality is the same in the two countries, but Giuliani's bogus logic led him to declare that the US healthcare system works better than the UK's.

Right: same mortality rate, but pick some arbitrary statistic and claim that it shows there's a difference, even when the actual mortality rate is the same. Brilliant civic leadership.

REMEMBER, PEOPLE, THE PURPOSE OF STATISTICS IS TO IMPROVE OUR GUESSES. Actual outcomes outweigh interim statistics!

(Not to be outdone, in the UK, Tony Blair declared that his country was doing poorly and must improve 20%.)

STOP BEING IGNORANT. Don't use a tool if you don't know what it's for!

In my annual physical today, Dr. Danny Sands and I again discussed whether I should get a PSA test (prostate cancer test). He first brought it up three years ago, and he (unlike many physicians) made clear that the PSA is notoriously unreliable: many false negatives, and many false positives that lead to unnecessary treatment. That's the kind of advice I like: give me straight-up information about the pros and cons, and let me choose.

_________________

2: Every choice in life has risks.
You cannot evaluate doing something without also evaluating not doing it, and comparing.

See, as with the prostate example, there are risks to screening and risks to not screening.

Many articles have discussed that screening tests (a) cost money, (b) can lead to unnecessary treatment because of false positives, which (c) cost more money and (d) can cause harm.

It's exactly the same as the UK birth control issue. The erroneous public reaction was caused by evaluating one arm of the choice and not comparing it with the other. Result: greater risk of clotting: a botched conclusion with medical consequences. You could call it statistical malpractice.

Just SHUT UP if you want to tell me "Don't take away my tests!!" I didn't say that. Don't be insane, hearing things I didn't say. That's hysteria.

I'm not talking about the conclusion, I'm talking about how to make intelligent choices.

_________________

3. Who gets hurt? The patient.

In a comment on Gary Schwitzer's excellent blog, I said what really upsets me in the mammography insanity is that (ironically!) it's women who are put at increased risk by these misinterpretations: women who are left with less accurate advice.

In a similar way, the first case in that paper is about a 1995 UK scare caused by news that new birth control pills were causing a 100% increase in blood clots. True – but the reality was that they produce 2 clots per thousand women, vs. 1 for the old pills. Literally a one-in-a-thousand difference. But oh wow, that's 100%! Headlines!

Here's the consequence: Because of ignorant misinterpretation, massive numbers of women went off the pill, and in the following year ...

13,000 more abortions were done in England and Wales
13,000 more births, including 800 under age 16

The special irony is that both abortion and pregnancy have higher rates of clotting than the pill itself. So the whole ignorant diversion was not only ill-considered, it worsened women's health (while increasing abortions and births).

Doesn't it irk you that the righteous protests about protecting women's health, ignorantly considered, lead to bad advice?? These errors in interpreting science harm people.

_________________

4. The idiocy of asking celebrities their opinions

Whatever credibility our network news media had with me, they lost it when they trotted out ignorant celebrities to contribute to the misinformation campaign.

A new blog, the oddly named Celebrity Diagnosis, has chosen the mission of talking about health issues through the lens of celebrity discussions. They cite how dumb celebrities have been on this topic, particularly Jaclyn Smith saying "They want to abandon proven therapies. It's wrong."

Excuse me? Since when is a test a therapy? Jaclyn, is checking your pants the same as laundering them? Maybe that's over your head. So shut the hell up on medical advice, willya?

But that's what Gilles is talking about when he cites moral panic, which the Center for Media Literacy defines as "A sudden increase in public perception of the possible threat to societal values and interests because of exposure to media texts."

And what better way to drive people to panic than fear of death?

But hold on; I've been there. Let's think.

_________________

5: On the fear of cancer and death

When I learned on 1/22/07 that my median survival time was 24 weeks, it was NOT pleasant for me. "No. I am not done. Not ready to go."

But after the abrupt shock, I found myself able to look it in the eye and think. What are my choices? Where do I start?

Twenty years ago I listened to tapes titled "Conscious Aging" and "Approaching Death" by Ram Dass, a spiritual teacher who was born Richard Alpert and who, in the sixties, wrote Be Here Now. After years in Tibet with gurus he worked with many dying people during the AIDS epidemic. (I've seen him speak, and believe me, when he entered the large hall, some sort of presence filled the room. Never seen anything like it.)

He speaks of death matter-of-factly, and his perspective aided my acceptance of what I was abruptly facing. I wasn't interested in going through that door, but after a while I realized that if that's what was happening, I could face it.

And that freed me to have authentic conversations with people about it, and with myself: I was able to choose my path with a clear mind.

I don't diminish the concerns of people who face cancer and/or death - everyone's trip is different. But throughout my cancer journal on CaringBridge.org I talked about the power of the words and concepts we use in discussing our world. I opted not to engage in discussion of "OMG!" and "How terrible!" I chose to think about "What are my options? What could be done that would make any difference?"

If we could all face death calmly I bet we'd be able to make much better choices in how we interpret evidence.

_________________

6: Think.

That's why hysteria (Wikipedia: "unmanageable fear or emotional excess") is so very, very harmful. When people lose their minds, perhaps because they're told foolish misinterpretations of the evidence, what are the odds of reaching a sane conclusion?

Oh wait: we don't have to ask the odds. This time we know.

Well done, Gilles. Obviously you touched a nerve.

Engage with Grace: The "One Slide" Project

2009-11-26T09:39:00.004-05:00

Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes. As someone who faced the thought of death not that long ago, this touched me, and I participated. Have you thought about it?

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. It was intentionally timed to coincide with a weekend when most of us are with the very people with whom we should be having these important conversations – our closest friends and family.

Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so the organizers thought that this holiday we’d try something different.

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post.To help ease us into them, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:

Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.

Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.

Wishing you and yours a holiday that’s fulfilling in all the right ways.

To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. If you want to reproduce this post on your blog (or anywhere) please write to me and I'll send you the HTML.

"Who Says I Can't?" Jothy Rosenberg's incredible story

2009-11-21T21:37:00.004-05:00

During my illness three years ago people said my attitude was incredible, and my gut says yeah, it played a role in my total recovery against nasty odds. The first paragraph of my CaringBridge journal ended saying we'll "do everything we can to maximize my chances. Top of the list: a strong mental attitude and a clear mind!"

Thanks to online Connecticut friend Kathleen Tinkel, I just discovered a guy who takes "attitude" to a new level of inspiration: Jothy Rosenberg. 37 years ago he lost a leg to osteosarcoma, which spread 3 years later to his lungs; he lost 40% of them. Well, check this out:

He's ridden the 192 mile Pan Mass Challenge bike ride seven times, and has swum from Alcatraz to San Francisco 16 times. With one lung and one leg.

Why? He writes, "To get through life at all I desperately needed to find a way to regain a sense of self-confidence. I did that through athletics."

He's written a book, launching Dec. 16, titled, aptly enough, "Who Says I Can't?" His story's on his blog here, and the book's Facebook page is here.

I gotta meet him....

Update March 17, 2010: Jothy is currrently planning his next Alcatraz swim. Go donate. I did.

His website/blog: http://www.whosaysicant.org/
Twitter: http://twitter.com/Jothmeister
Facebook fan page: http://www.facebook.com/whosaysicant
His book, "Who Says I Can't?" http://www.whosaysicant.net/

How can public media help healthcare?

2009-11-09T08:35:00.001-05:00

Time for a quick crowdsourcing exercise.

In a few hours Lee Aase of Mayo Clinic (Twitter: @LeeAase) and I will be in a workshop on how public media can help with public health. We'd like your thoughts.

The workshop is at the Paley Center for the Media in Manhattan (they also have a branch in LA), and is funded by a small grant from the Ford Foundation. The issue is to consider, in this time of great pressure for healthcare and significant change as the media world goes digital and social, how public media can help.

Excerpt from the invitation letter (emphasis added):
_____

Research shows that one of the major contributors to health inequities and poor health is insufficient access to health-related information. ...[a panel] concluded that “[i]ntransigent and growing health inequities call for new thinking about the role of public health in creating the conditions in which all people can be healthy.” Among many recommendations, the Panel called for new community partnerships that would increase access to health information and community health-related outreach.

...

This workshop will look at some critical questions that have far-reaching implications for the health care industry, general public, policymakers, private media, and public media.

Where does the market fail in reporting on health-related problems and solutions and how can public media fill this gap? [market=normal commercial business processes]
What role should different public media institutions, including social media and applications, play in health reporting?
What is the proper role of public media in serving as a platform and clearinghouse for health-related information and data?
What are public media’s special competencies, potential contributions, in health outreach (informational and other)?
What structural changes are necessary in terms of technology (e.g., bandwidth), partnerships, funding to enable public media entities to play a more productive role in the dissemination, collection, and creation of health information?

Your thoughts on any of those will be appreciated!

My talk at e-Patient Connections 2009

2009-10-27T22:07:00.012-04:00

e-Patient Connections 2009 is a new event in an already-crowded fall season on the healthcare conference circuit. I had already attended Medicine 2.0 in Toronto, Health 2.0 in San Francisco and Connected Health in Boston. So not only did I wonder "Who needs another conference," I wondered seriously about taking more time away from my office at TimeTrade Appointment Systems.

But I decided this one is different: it's a marketing conference (about marketing to patients), and being a marketer and a patient, I decided this would be a place to share my views of how healthcare is changing - patient engagement - in a different context, so I accepted.

Everyone's time slot was half my usual, and it's a puzzle trying to figure out what to say to a new audience. (That's no problem for speakers who say the same thing to everyone including their dry cleaner, but I have this fixation with saying something this audience might find useful.) (I like to get invited back, so it's a good thing when the audience finds value.)

I decided to present my thoughts in the context of one of my favorite topics: authenticity.

(These are just slides - no audio.)

Authentic Value: Being Known in e-Patient Communities

View more presentations or Upload your own.

By the way, thanks to Slideboom.com for having the only slide-sharing service I know of that properly handles my complex animations. They're good. I don't know why people keep using services that don't work right.

A quote I won't soon forget

2009-10-16T22:38:00.003-04:00

A note I posted last night on the e-patient blog

Marcia Angell MD is a well-known, respected physician, long-time editor of NEJM. So it was a bit of a shock today when Amy Romano, blogger for Lamaze International, sent me this quote:

It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.

From Drug Companies & Doctors: A Story of Corruption in The New York Review of Books, around New Year's.

Dana Blankenhorn of the ZDNet health blog called it "a bombshell." I couldn't agree more. And I must say, with all the smart people in this community, why on earth haven't we heard more about this??

And how on earth are we supposed to be empowered participatory patients if we can't trust the world's leading journal?

For one thing, we can have our eyes wide open about the evidence we're supposed to trust. Get educated. Learn how to read health news reporting – including the journals. Wise up.

Think critically. It's a fundamental part of being an empowered patient.

____

That's what I posted last night. Then, this morning this happened:

Next week at the Connected Health conference in Boston, we're launching the new Journal of Participatory Medicine. The editorial and advisory boards include some people who, I'm told, have seriously good reputations in medicine, including Richard Smith, 25 year editor of the prestigious British Medical Journal. Unbeknownst to me, he's got a piece in the first edition that mirrors the above. So today, our person who tweets for the Journal, @JourPM, added these notes:

"R.Smith (BMJ) concurs w/M.Angell (NEJM) in launch of J. Partic Med: 'most of what appears in peer reviewed journals is scientifically weak'"

"Peer review must be job of the many rather than the few. This must, indeed, be part of participatory medicine's philosophy. R. Smith"

The first edition of the Journal will go live (online) next week. Subscribe/register (free, open access) here.

_____

Related reading:

No *other* conflict of interest, huh? (11/08)

Negative data on Seroquel suppressed by manufacturer (2/09)

Dr. Reuben deeply regrets that this happened (3/09)

Interview at Health 2.0 in San Francisco October 7

2009-10-14T23:05:00.005-04:00

The Health 2.0 conference in San Francisco was a tremendous success in a lot of ways. I made some great business contacts, heard some stimulating conversations on stage, and some very stimulating conversations off stage.

ICYou is the video company that recorded the presentations. In their booth they also recorded informal interviews with people. Here's mine. (It doesn't have a preview image for some reason; just click it.)

To Have and Have Not, part 2

2009-10-07T03:24:00.001-04:00

The other day I wrote about Fred Holliday. He had clearly troubling symptoms, was unable to get good care due to insurance issues, and is dead. I had the same disease, without symptoms, and it got caught during routine checks.

It hasn't stopped and it won't stop. A week ago I went to a dermatologist because of an itchy thing on my forehead that hadn't gone away for months. It was a pre-cancerous sun-related lesion, which would have become cancer. Caught early, it was frozen off in a one minute treatment that didn't even require Novocaine. I'm left with a spot on my forehead, which they say will be gone in a few weeks.

And every time I see it I think of Fred.
______________

People argue about what reform is. To me there's nothing more fundamental than the simple question of whether people can or cannot get care, which among other things means taking care of little problems before they become big problems.

The simple question of "can or cannot get care" is such a fine line, like a razor's edge that makes all the difference in the world: if you can get care, your outcomes can be more or less like mine; if you can't, like Fred and his family, nature will take its course. You are on your own to battle it.

Fred was one of the tens of millions for whom the answer was "No." He's dead at 39, leaving a widow with a 3 year old and an 11 year old who's high-functioning autistic. And that sucks. It's a disgrace.

There are lives at stake in this issue, people. This stuff matters. We can do better.

The Razor's Edge: To Have and Have Not

2009-10-06T01:19:00.001-04:00

This is perhaps the most difficult thing I've written about, because in it I confront the reality that when it comes to healthcare, I am a Have, and someone quite like me was a Have Not. I am alive because I'm a Have, and he's dead because he was a Have Not. And I despair that America allows so many citizens to be Have Nots.

(Don't think this is a "liberal guilt" post; there's no guilt here. I got good treatment, as I should. This is about something else.)

In December 2006 I had an annual physical, which led to a shoulder x-ray that incidentally discovered a surprise tumor: kidney cancer that had spread. That x-ray saved my life, because I was near the end, even though I had no particular symptoms.

Two years later Fred Holliday entered the hospital. He'd had symptoms for a year - night sweats, fatigue, bloody urine - but his health insurance was inadequate to make tests affordable; they didn't bite the bullet until it was too late. It took months to get a diagnosis of kidney cancer (like mine) after weekly tips to the primary care doctor and two ER visits. After hospitalization, it took months to receive treatment.

For him it was too late: he's dead now.

Fred couldn't afford to get tests for his plainly evident symptoms, and it cost him his life. I had the same disease without symptoms, and it was found because I could afford to get checkups. And I'm alive today as a result.

Healthcare Haves and Have Nots:
It's a nasty reality that's got to change.

Lack of coverage costs people their lives, costs families their spouse, costs children their mother or father. We can do better than this.

And it doesn't stop here - the story continues. More in the next post.

Why it's taking so long for me to write about Innovator's Prescription

2009-10-04T14:50:00.005-04:00

In a comment on my Verizon Wireless post the other day, someone asked if I'm going to write more about The Innovator's Prescription, the book that's been sitting in my "Currently Reading" widget since June. Since I just pulled it out to continue, this is a good time to fess up to what's going on.

This book is breaking my head, in good ways. It's taking me a long time to think about all of its insights, assimilate them, and let them filter down into the nooks and crannies of my thinking about healthcare.

As one indication, here's a snapshot (courtesy of my webcam, as I sit on this Virgin America flight to a conference in San Francisco) of a two-page spread of the book. Now, I don't usually make this many marks in a book when I read it; I only mark up things I really want to remember, really want to come back and study again. But this single two-page spread has many underlines, circles, margin notes and highlights.

This book is dense, and I mean its information content, not its writing style. And what the authors say about healthcare delivery systems - and how industries evolve - is resonating with my experience both as a patient and as someone who's watched industries evolve, from inside and out, for decades.

Two weeks from now I'm speaking at a conference in Philadelphia with Jason Hwang, co-author of the book, so I want to get it wrapped up by then. (He's the opening keynote; I speak that afternoon.) But just to give a hint of how much juice there is in this book, here are some notes I've scribbled on the inside cover about potential blog posts:

The three approaches to achieving data interoperability (p. 138)
Toyota's approach to the "right data in the right place at the right time" problem (p. 138)
Our health data must be open, not held hostage - vendors must learn to make money by adding value not locking up our data in their private vault (p. 142)
As the data become commoditized (not locked up), the software tools that add value will become decommoditized, and this is where new vendors will make money... as old-wave vendors will suffocate. (p. 142)
3/4 of our direct healthcare costs are related to chronic disease, not acute illness. Any approach that doesn't address this can only dent the surface. (p. 150)
Their study across industries over the years has shown that the improvements brought about by disruption require new business models too, not just new technology. The business model (the cost structure!) of physicians and hospitals is appropriate for acute illness (relatively brief time from diagnosis to cure or death) and isn't viable for conditions that last for years. (p. 150)
The importance of finding why a pattern happens - the underlying mechanism that explains our observations and predicts what's likely next. (p. 151)

Each of those points is important enough that I'd be willing to write a post about it or give a whole speech about it. And that's in a 13 page segment... of which pp 143-148 are a chapter's endnotes.

Mind you, I have some concerns about limitations of their view, but before I spout about that, I want to have finished it!

Look, this is an important book. It's not political; these guys are trying to drum into our skulls that they've found something that's important to understand.

I know not all great healthcare minds agree with their prescription, and only time will tell whether they nailed it. But if I had a half million to invest, I'd be avidly sizing up my options in light of the Christensen/Hwang framework.

It's entirely readable (no geek credentials required, no HITSP ARRA alphabet soup). There is no magic to this. Be old-fashioned: read a book, and understand it for yourself. :-)

Many goings-on ... an update

2009-10-03T17:22:00.002-04:00

This is an update for friends who don't hang out routinely in the world of healthcare transformation, where I'm spending more and more of my time. For those who do, there's nothin' to see here, so just move along. :-)

The Society for Participatory Medicine is gathering steam. I would love it if you join; it's only $30 (yes $30 to join a medical society), and yes everyone is welcome (that's the whole point of participation), and if you want to join but $30 is hard right now, you can have a scholarship. Free. So just go join. Thank you.

Its new Journal of Participatory Medicine (free, online) is launching at the Connected Health conference in Boston, Oct. 21-22. My doctor and I are speaking on the 22d. Twitter uses can follow the Journal at @JourPM.

In the run-up to the launch, as chief blogger on e-patients.net, I'm organizing a series of blog posts on "Why PM?" (participatory medicine). (Twitter users, this series is hashtag #WhyPM.) Posts in this series:

9/21: Give patients (that’s you) access to all their (your) data – so they can help - a comment on my keynote speech at the Medicine 2.0 conference in Toronto 9/17. We hope to have video of the speech available soon, but not yet.
9/26: Participatory Medicine Around the World: the Seven Preliminary Conclusions reach India - a physician in India discovered the e-patient blog and agrees with our principles
9/27: What Participatory Medicine can learn from a $2,467 phone bill - as I originally noted on this blog, when I went to Toronto there was a bit of a mishap on my Verizon Wireless bill. How it happened - and what they did to fix it - contain valuable lessons as healthcare looks as adopting better practices for good quality data.
9/28: Social media and Healthcare: Hospitals Lead. One of the great gurus of social media, Rohit Bhargava (of Ogilvy's online division), wrote that hospitals are starting to adopt social media. I commented, "A signal moment has happened: When a major business authority with no history in healthcare speaks up about a shift in the wind, it’s worth noting..." And, terrifically, Rohit responded by looking into the Participatory Medicine concept, and tweeted "love the concept of participatory medicine" and he started following @JourPM on Twitter. That is cool. And important.
9/29: Journal of Participatory Medicine and e-Patients. In Toronto I met up with John Sharp of the Cleveland Clinic. (That's the place that's often cited as a model of modern approaches to healthcare.) He's entirely "boarded the boat" about patient empowerment; his guest post for us starts "If you have not read the e-Patient White Paper, you do not understand the future of medicine."
9/30: A Lifetime of Participatory Medicine Can Start With Maternity Care. The PM movement has been discovered by Lamaze International. I was thrilled when their blogger Amy Romano contacted us, because for the first time it brings a non-disease community into the e-patient community. And, Amy's a heck of a writer, as shown by this guest post on our blog.
10/1: Participation Matters by Susannah Fox of the Pew Internet & American Life Project. Pew doesn't advocate on any issue; Susannah simply documents what Americans are and aren't doing. Significantly in this post, she reports that 42% of adults say they know someone who's been helped by medical info they found on the internet, up substantially from 2006; and only 3% know someone who they say was harmed, same as 2006.
10/2 - and this is the astounding one: “Doctors Are Killing Their Profession, the Healthcare System and Their Patients with Paternalism”. Those strong words come from a board certified neurosurgeon who describes, on his blog, what paternalism in medicine looks like, and the harm it's doing. (He saw my presentation in Toronto and mentions it.) Significantly, he also describes how many doctors have been taught to think that way: "Your patients don't want to know the details, they just want to get well. It's your responsibility to shoulder the burden." Clearly undoing that training is a big part of what the Society hopes to achieve.

I've also continued working half-time at TimeTrade Appointment Systems, while starting my healthcare consulting business ePatientDave.com: So yeah, it's been busy!

Next up, flying tomorrow to San Francisco for two events, HealthCamp SFBay and then on a panel at Health 2.0. Friday 10/9 I'm attending a patient safety event in Boston.

Then, the following weekend, Sunday night 10/11, we go to beautiful Ogunquit, Maine, to hear the phenomenal Suede, in her first New England appearance in a year! If you're in this area, get reservations and join us!

Don't I just LOVE totally screwed-up data. (But check how they dealt with it.)

2009-09-26T12:25:00.006-04:00

I often say that I like "Good quality data, well managed." And I talk about the importance of having good reliable processes to ensure reliable data. And I talk about how most industries got this sorted out decades ago.

Well, sometimes things go a little haywire. Here's the email I got last night from Verizon Wireless.

Hm, it seems that when I went to Canada for the Medicine 2.0 conference last week, and adjusted my Blackberry data plan to include Canada, something Did Not Go So Well.

Me being me, I'd done quite a bit of research into my options before the trip. (I have this thing about people knowing what their options are, and being actively engaged to find out.) At the time, the Verizon agent I spoke with said that my data charge would be 0.02 cents per KB. I said "So that means 50k would be one cent, and 1 MB would be 20c." She said "Right."

Well, not so much. Their fraud prevention department called while I was in Canada, because my data bill was going through the roof. "No," they said, "that was 0.02 dollars per KB."

Evidently the original agent didn't know "$0.02 per kb" is point zero two dollars which is two cents. And when I did the math for her, concluding "1MB = 20 cents," she said yes; it was evidently over her head.

So when fraud called I popped my cork. But they said "No problem, we're setting it to the other plan, retroactively." So the bill would be just fine.

Well, apparently everyone got the word except the billing computer, which just sent me a bill for two grand.

When I got the email I called customer service and they hopped right on it. They said it'll take a few days to sort it out but they said the conversations are all recorded in the system and they'll work it out. I asked the agent to send me an email confirming that we'd talked. He said he would. He didn't. I called today and repeated the request. This time she sent one.

============

What can we learn from this? It's not just that companies make mistakes; there are important differences in what happens when there is a mistake. Although errors occurred in Verizon's work (twice), they had checks and balances and processes for correction:

The fraud department detected abnormal values and jumped into action. In fact they called me while I was in Canada to say that the amount was crazy-looking.
They didn't make me wrong about it. Too often a company will say it's the customer's responsibility. Those companies don't win my loyaty.
The people who called were empowered (authorized) to fix the problem. There was no "there's nothing I can do," no "I'll have to speak to a supervisor."
Our conversations were noted in the system so subsequent workers knew what happened.
They sent me the bill amount by email, so I quickly spotted the problem. (I confess that I don't immediately open every bill that arrives, especially if it's one that rarely changes.)
They had customer service people available 24/7. This enables following up on a problem when my schedule allows it.

This is a great model for healthcare providers who are considering improving their processes for detecting and correcting errors in data.

At the same time, note the steps I took as an empowered / engaged / activated consumer:

I researched my options. We as patients can and should do the same. Don't expect your physicians to think everything out for you; get engaged, be responsible.
When I did spot the problem, I called immediately. The sooner you react, the better.
I didn't blame the person I got on the phone. He had nothing to do with the error. (But I did expect him to fix it.)
I described what happened, and ended with "So: what do we do to get this straightened out?" I find that this question puts the power in their lap, where it belongs, and hints that they look up how to solve it (if they don't know). And, the "we" says I know I might need to do something too.
Followed up. When the email didn't arrive overnight, I called back and firmly said what I want.

The takeaway for empowered patients and people improving healthcare:

"Good quality data, well managed" doesn't automatically happen; keep an eye out.
It can get screwed up several ways, both human and systemic. That's why we need sanity checks and processes to resolve problems.
Learn from other industries. There's no reason on earth why healthcare providers can't use the same processes as Verizon Wireless. (It's not like they'd have to invent them - the processes exist.)
Expect competence in your data providers.
Be responsible: do your own sanity checks. You may not want to micro-check each detail, but never ever presume that anyone is perfect - especially not in healthcare, where errors are common and systematic sanity checks are too rare.
Expect corrections. The healthcare industry is immature in this area: from what I hear, it's common for patients to find that a hospital or physician doesn't want to correct errors in your record. Demand it.

Healthcare protest video: "We're #37"

2009-09-13T17:49:00.003-04:00

About time somebody did this:

I usually give people the benefit of the doubt on differing opinions, but lately I increasingly wonder what the people who oppose change are thinking.

My route for Sunday's ride

2009-09-11T21:14:00.004-04:00

Well, how cool is this? I just found out about this nifty map of my route:

A Reason To Ride 25 Mile
Find more Bike Rides in Danvers, Massachusetts

What I didn't know about is that the ride, which I'd heard about as "a bit hillier" than "flat", starts with a 70' climb in the first two miles. Here's what that looks on on the "View Elevation" link in the map above: (click to enlarge)

At first I thought "Hm, I don't know what that'll be like." But I live on top of a pretty big hill, and I've never known how tall, but the other day I did ride up it, non-stop. So I just went over to Google Earth and checked - it's 35 meters (114 feet) in less than 1/2 mile. So I guess 70' in 2 miles won't be a problem. :&ndash)

COOL! (If you haven't yet, you can donate here. Thanks!

(btw, yeah, I used low gear for most of that hill...)

Help create my talk at Medicine 2.0 in Toronto: "Gimme my damn data"

2009-09-09T21:42:00.003-04:00

Yes, that's the title of my talk to open the Medicine 2.0 Congress in Toronto next week. Yes, it's the published, advertised title. I believe patients should have complete access to their health data.

Whose data is it, anyway? I said that in May (in my post on "meaningful use"), I was one of the first to endorse the Declaration of Health Data Rights in June, and it was the crux of an ad hoc talk I gave in Washington in June.

But we certainly aren't there yet. Please help me create my talk. What would you want to discuss in Q&A?

Last night I tweeted:

I intend to make a forceful case for it, and I'm not aiming to preach to the converted.

So the question will be, what could I say that could make any difference - move the unmoved?

I have no interest in polarization; my schtick is to move people's point of view.

A side note -

This will be my first-ever keynote to open a conference. Many thanks to Gunther Eysenbach for inviting me. Gunther is the man who, years ago, did the original study that failed to find any cases of "death by googling," an evidence-based finding that opened the door to patient engagement. Today he is publisher of the Journal of Medical Internet Research.

So, here's my question: What could be my "call to action" as the conference starts? (The full conference program is here.)

See, my secret for mid-conference talks is to "listen to the room" and see what needs to be said. But when you're the first guy out of the box you can't do that. :)

For HR professionals: Prepare for increased affirmative action audits

2009-09-08T15:23:00.001-04:00

This is a non-medical moment here. I'm demonstrating to my friend David Kourtz, an extremely savvy HR guy, how to grab a thought out of his copious thought-o-sphere and turn it into a tweetable blog post.

We're sitting at Panera and he said:

"The OFCCP has had a significant increase in the number of investigators hired this fiscal year. That will result in many more companies' affirmative action plan being audited as the new active investigators come online."

I have to say, this is not the kind of thing that would have drawn MY attention. But that's the power of a good social network - online as well as off.

David knows this stuff inside out. Contact him at dave.kourtz (at) hr-roi (dot) com.

Launching my new business and its web site

2009-09-08T01:44:00.002-04:00

Some of you know that I'm now working part time at TimeTrade Appointment Systems. I'm taking the plunge, starting my much-anticipated business as a consultant and analyst in the new world that people are calling "health 2.0," "e-health," patient empowerment, patient engagement - all of that.

It's terrifying and a thrill. I've been working with some generous friends and advisors to work out the message I want to convey to the people who we think should contract with me. Some delicious opportunities are already in the works, but no chickens are counted until they hatch.

The new website is at www.ePatientDave.com. Send clients!

For the first time in my life - I'm a bike riding fundraiser!

2009-09-04T22:41:00.012-04:00

See updates at end and in comments.

We've all heard of personal transformations after a health crisis, but this one's a little abnormal: I have become a bike rider! For the first time in my life! (Well, since high school.) Donate now, or read on:

In June, with no "should" attached, I told my wife "I want to start riding a bike." I got myself a yard sale bike and started riding it, and I liked it.

I bought some pimpy gadgets for the bike. Nothing major, but yeah, I pimped my yard sale bike. I liked it more.
I found a really nice big park in my town, a riverside park I'd never known was there. I rode through it end to end until it wasn't big enough.
I had a concern about discomfort in my arm so I checked with my orthopedist. (It had hosted a metastasis during my illness.) A-OK.
I rode the park's trail extensions to downtown Nashua till that wasn't enough.
I learned there's a 12 mile "rail trail" from Nashua to Ayer, MA, and I loved it.
12 days ago I rode it all the way, back most of the way twice - 30 miles total. First time in my life I've ridden 30 miles.

So I went home and opened the email where... my orthopedist Dr. Anderson had invited me to join HER in a fundraiser bike ride for the hospital's cancer research - and I registered!

So now it's your turn: you get to donate! To my very first cancer fundraiser!

Click here. And thanks!

Update 9/5: This is good for the soul, too: here's a photo I snapped today on my training ride, from an overlook above Fresh Pond in Cambridge:

You guys are awesome – you've already made me the #10 fundraiser in the whole event. This is SUCH an excellent way to thank my hospital. And extra thanks to friend Harry Zane, who's joined the team and will ride too!
Today I rode the Minuteman Bikeway rail trail from Bedford MA all the way to Alewife Station on the Boston "T" subway line, then continued to Fresh Pond - a 25 mile round trip. This is so unlike me - except now it's not! Thanks for your support.

Update evening 9/7:

Today I did another 22 mile ride on the Nashua River Rail Trail. I "PR'd," as athletes say - beat my own Personal Record, doing the distance in 1:54, vs the 2:12 it took me to do that distance a couple of weeks ago.
Your donations have raised me to #7 in the event's list of top fundraisers. Thank you!

Updates continue in the comments.

BIDMC's Dr. David McDermott on MDX-1106 (experimental treatment)

2009-09-01T20:51:00.010-04:00

This is the next in a series of podcasts on treatments for kidney cancer, interviews with members of my care team at Boston's Beth Israel Deaconess Medical Center.

May 2009: Dr. Andrew Wagner, my amazing surgeon, spoke on surgical options
July 2009: Dr. David McDermott, head of the biologic therapy program, spoke on medical treatment options.

Today's podcast arose from a discussion on my ACOR kidney cancer patient community. As I've said many times, in today's e-enabled world, it's no longer rare for patient communities to learn about (and start talking about) new treatments long before your everyday physician hears about them. This is such a case: a patient at my hospital spoke up about this new treatment on the ACOR kidney cancer list, and questions arose. Our physician, Dr. McDermott, was kind enough to take time to record this interview.

For patients who are looking for these treatments, here are links to the relevant pages on my hospital's web site:

The renal tumor program (integrated surgical and medical team)
The biologic therapy program (high dosage Interleukin-2, cytokines, angiogenesis treatments, and more)

_____

Here's a link to all my podcast posts.

The Business Model of Health Care

2009-08-30T08:43:00.008-04:00

Twitter friend @StaticNrg, a highly empowered Cushing's Syndrome e-patient, sent an article that ends thus:

Conclusion

Our society has decided that provision of certain services is best left to the government and out of the marketplace. It is ridiculous to think of multiple water systems, for example, competing to bring drinking water to individual households. It is equally unthinkable to subject fire departments to the economic dictates of competition: we certainly do not want fire chiefs to be creating more demand for their work. We do not choose to divvy up national defense between competing suppliers of armed services, for obvious reasons. Alternatives to these types of public services just do not fit into the corporate model that works so well for consumer goods and services. They are either too expensive, lacking in overall benefit to the entire populace, or just plain too chaotic.

Should health care be any different? Do we want the consumer-driven marketplace to rule in such a way that untrained, vulnerable individuals can order for themselves expensive medical tests that have no proven benefit and may carry incalculable opportunity costs? Do we want entrepreneurial efforts to increase consumption of highly profitable drugs, regardless of cost and any consideration of what might be best for medical care? Do we want a system that rewards the creation of expensive and profitable services, such as NICUs, without consideration of need? Do we want to continue to witness the compromise of the integrity of basic medical research in the name of profit?

As these questions are framed, the answers are obvious. Clearly, it is necessary to overhaul our health care system so that decisions are made to improve health, not the bottom lines of corporate enterprises. Current issues in health care that politicians debate (universal health insurance, medical malpractice reform, a drug benefit for senior citizens) are important, but dealing with them will constitute mere tinkering with a system that needs more than a patch here and a stitch there. Rather, fundamental assumptions about medicine’s role in our society need to be considered. It is a wonder that we allow such a flawed system to persist. It a greater wonder that the basic question of what health care should be, a business or a social service, is not even on the national agenda.

I thought "MAN that makes sense! Who brought this into our discourse?? I sure hope people listen!"

Then I saw the publication info:

James P. Whalen is a medical doctor and a freelance medical writer living in Oak Park, Illinois. The Independent Review, v. VIII, n. 2, Fall 2003, ISSN 1086-1653, Copyright © 2003, pp. 259–270.

2003. Six years ago! Still makes sense to me.

Patients, listen up: the power of your attitude

2009-08-08T01:09:00.003-04:00

One aspect of patient empowerment is taking responsibility for your/our situations. In the new discipline of participatory medicine we talk about collaborative partnership with our providers (docs, nurses, all the professionals).

One doc, Stanley Feld, talks about "physicians as coaches, patients as players." Another well-known hotshot, Fast Company's "doctor of the future" Jay Parkinson, talks about being "the CEO" of your body - the one who makes the strategic decisions and assembles the team. (The CEO doesn't have the required expertise, but is responsible for acquiring it. The experts advise, but the CEO is responsible for using the advice.)

And in my view, one aspect of this is being responsible for the mental aspect: our attitude.

This comes to mind because tonight I ran across this, a journal entry from the start of my treatment:

DO YOU HAVE CANCER, OR DOES IT HAVE YOU?

If this question's new to you, think about it. When I first got the diagnosis, the cancer sure had me: I was at its mercy. Every change in my outlook came from outside me: it was something that seemed to happen to me, something over which I had no control.

I have a mental image for 'the cancer has me.' In that image, the cancer is like a big dog with a chew toy (me) in its jaws, shaking the daylights out of it and tossing it around.

The pivotal change came when I chose to get in action and do whatever I could, learn whatever I could. Mind you, who am I to know how to fight a cancer?? Do I know anything about the biology of cancer? No. But now my outlook is that I have a cancer in my life, and I'm doing what I can to manage it .... and I'm creating new ways to interact with it, beyond what others have thought of. (Your feedback here tells me that.)

I say it's vitally important that YOU realize what a difference this makes. Remember something I said back in February: citing a study, a nurse in my email group said 'If you're actively involved in creating your care, learning everything you can, and finding the best care available, then your outcome automatically moves to above the median.'

Paul Levy posted that on his blog 120 weeks ago. (A bit over two years, though it seems like ten.) His post drew an unhappy comment from someone anonymous:

This is the sort of American positivity that drives me nuts. Unless you're lucky enough to catch it early or have one of the curable ones, cancer will probably kill you in a few years. This is a time to put your affairs in order and do those things you always wanted to before you die, not be all positive and managerial.

Well, we all know how THAT turned out. :-) (Another anonymous commenter responded, "Buzz off, Eeyore.")

In the prolog to my journal I cited Norman Cousins's great book Anatomy of an Illness, which chronicled how he used belly laughs, love, hope and faith in beating an unbeatable stomach cancer. His book starts:

That was thirty years ago, folks. Back then nobody knew the facts that today we call psycho neuro immunology. (Attitude [psych] measurably affects the nervous system [neuro] which measurably affects the immune system [immunology].)

Yes, folks, it's been shown that your attitude can affect your immune system. You gonna take responsibility for that?

Disgusting, racist anti-reform crap

2009-07-31T17:00:00.003-04:00

Ordinarily I ignore political emails full of idiocy, but this time I've had it. I've received this image in the email three times. It makes me puke, and so do the people who've sent it to me.

You really have to wonder who put this together. Clearly it's from the Republican side of the house, and clearly it's racist, and clearly it's either air-headed or (if it's not from an air-head) it's from someone who has a brain and is using it for raw, racist, BS propaganda.

Against health reform.

Putting Obama's face on a jungle denizen's body, then attaching a Communist hammer and sickle, and attaching it to the health reform subject, is purely hateful. It disgusts me.

Really, think about it: who put that together? What was their motivation?

Customer Service in Healthcare (not):An All-Too-True-Story

2009-07-28T16:08:00.006-04:00

Cross-posted from my day-job blog

What is wrong with these people???

I've been having a pain lately, in an arm that shouldn't be having pain due to a past condition. The orthopedist who took care of my bones said to get an x-ray at some local shop and send her the CD. (She's happy to save me the time of driving into Boston, and she knows local clinics can make a good x-ray.)

So I called the radiology department of a well-known, highly rated clinic in nearby Burlington – let's call it Elsie – to make an appointment.

(You know about appointments. They help customers get served quickly and conveniently, and help managers plan their resource utilization. The win-win thing.)

Me: "Hi. My doctor says I should get an x-ray and send her the CD. Can I do that? -- Good, I'd like to make an appointment."

Elsie staff: "Oh, you don't need an appointment. Just come right in. I mean, you can have one if you want, but you don't need one."

Me: "Cool!"

Me to my manager: "I'm going over to Elsie to get an x-ray. They said I can walk right in – should be quick."

I get there, find my way through their campus (the directions were perfect), and find radiology.

The line to check in goes out into the hall. And at the front of the line, the sign on the desk says the current wait time is 30 minutes.

I look at my watch, conclude I don't want to wait 45 minutes (or even 30) for a "no appointment needed" x-ray, and leave.

The parking machine wants money for my ticket. I talk to the cashier and the information counter; saying I wasn't able to get my appointment so I don't want to pay. (I've been there less than 10 minutes.) Both people look at me like I'm crazy and say there's nothing they can do. A third person says maybe security will validate it. They gladly do.

On the way out I call again.

Me: "I want to make an appointment for tonight."

Elsie staff: "Oh, you don't need an appointment. If you want to make one for sometime tomorrow you can."

Me: "I can't make one for this evening so I don't have to wait?"

Elsie: "No…" (sounding rather uncertain about why I'd be asking)

It's clear to me that my time is not the slightest consideration to this clinic. I've been hearing this about healthcare in general, but I know of places where they do care. (My own hospital is one of them, and I know there are others.)

I just wonder, what on earth is so complicated? I happen to know first-hand that an appointment system for a few workstations is not at all expensive. (I work for TimeTrade Appointment Systems.) Instead, they have a line of people out into the hall – sick and injured people, typically – and they cheerfully (genuinely cheerful) say "Oh, you don't need an appointment."

Right: just show up and wait. We'll get to you when we get to you. Reminds me of the t-shirt that says "I don't have a drinking problem. I drink, I get drunk, I fall down. No problem."

Methinks the world of healthcare is (mostly) so wrapped up in its own importance that it doesn't even occur to them to respect their customers' time. And that's gotta change.

Terrific Apollo 11 photos

2009-07-19T23:15:00.003-04:00

This is a small break from our usual health-related fare, for good reason. (I say so, and it's my blog, so my opinion rules.)

The Boston Globe's site Boston.com has a terrific series of 40 photos about the Apollo moon landing 40 years ago. Most are pictures I've never seen. I encourage you to go look.

Amidst all the world's cynicism and uproar today, this story continues to inspire, and for good reason.

My favorite pair: Neil Armstrong before the launch...

...and after he'd walked on the moon:

These astronauts were all tough-guy military test pilots, but I recognize that smile: I knew an awful lot of hippies who had exactly that same grin on their faces back then, albeit for different reasons. It's called, approximately, a spit-eating grin.

Call me a fool, but humanity continues to inspire me. That was forty years ago, people. Think what more we will achieve.

____

A tip of the hat to fellow alum Mike Laird for this.

BIDMC's Dr. David McDermott on medical options for kidney cancer patients

2009-07-09T21:53:00.009-04:00

In May I posted an interview with Dr. Andrew Wagner, the surgeon at Boston's Beth Israel Deaconess Medical Center who removed my cancerous kidney (and adrenal gland) in March 2007. In that interview we discussed the surgical options available to kidney cancer patients.

Here's the second in what I hope will be a series of podcasts for kidney cancer patients. This time it's oncologist Dr. David McDermott, of the famous Atkins-McDermott team.

Doctors McDermott and Wagner head the renal tumor program at BIDMC, which is an integrated "solution shop," a term used in some of the latest views of how to design healthcare delivery systems. More on that, another day. But for now, here's the interview.

p.s. Yeah, I know 40 minutes is too long. But y'know what else? Concerns about things like that are what keep people from trying things. And for better or worse, I just ain't the kind of guy who's afraid to try. Having been through this twice now, I can see a LOT of things I hope to do better in the future.

So hey, what are YOU not trying because you figure you gotta first know what you're doing?
____________

Next in this series, Sept. 1, 2009:
Dr. McDermott discusses MDX-1106, an experiment treatment

Or, view all my podcast posts.

What it's all about

2009-06-27T21:37:00.007-04:00

Tonight I'm doing something unusual for this blog - posting a story that has nothing to do with healthcare reform or policy issues but has everything to do with what healthcare is all about: keeping people alive and healthy.

Mike Guanci is a terrific sales guy at my company, TimeTrade Appointment Systems. Last summer his wife Patrice, age 39, had lower back pain (among other things), was found to have a fractured vertebra, and was diagnosed with non-Hodgkin T-cell lymphoma. The odds were not good. With four young kids the situation was especially poignant - not that there's ever a good time to have a rough prognosis, but having kids makes it rougher.

Patrice underwent an autologous stem cell transplant at Dana Farber Cancer Institute in Boston. It's an arduous treatment in which your entire immune system is killed off, including the disease, and then your own stem cells ("autologous"="your own"), harvested before the treatment and reinjected, grow a new immune system from scratch. During that time you're entirely vulnerable, and almost literally live in a bubble in the hospital.

Needless to say, when this works it's nearly a miracle. And it worked.

Here's the notice Mike posted on Patrice's CaringBridge site Thursday.

=========

Hi Everyone,

Today was a pretty big day in Patrice’s recovery. They did a PET scan on her to see if any lymphoma had popped up since her transplant in January. Thankfully, there’s none. They did see something in her nasal cavity that they want to take a closer look at but the docs think it’s a healing cold/allergy – and nothing to do with her lymphoma. They will take a closer look (to close the loop) via a scope but the doctor was confident enough that tomorrow they are going to remove her port (the access way they implanted in her nearly 9 months ago)

It’s hard to believe it’s been nearly 11 months since she was diagnosed. When we arrived at DF in mid-August of 2008, which seemed like 5 minutes ago (or 100 years ago on some days), they set our expectations right up front. She was going to go through a chemo regiment over 2 months (6 treatments every other week) – then, she would rest up and prepare for the Stem Cell transplant in January. After her stem cell (21 days in the hospital,) they told us that she would be confined to the house for 90+ days after. When you add that all up, they asked us to be ready for one year of treatments.

It was an incredibly emotional day for us both. Minutes seemed like hours, the day like a week. Finally, the doctor and the team arrived in the room and gave us the news. I must admit it was tempered happiness. I bought a bottle of champagne for this day – but it didn’t feel like a celebration, for some reason. Don’t get me wrong, we are thrilled – but when you are at Dana Farber, you see others who are battling so hard, for their lives. Not all will make it. In fact, not 5 minutes after we left the exam room walking on cloud 9, we walked by a teenage boy, bald as a cue ball, with one leg, headed in for treatment. It’s sobering, to say the least.

I’ve learned a ton from Patrice’s doctor. The high isn’t too high, low isn’t too low. That’s the way we are treating this. Lymphoma will always be in our lives (God willing only as a memory) – Dana Farber will always be in our lives (and based on the brand new 16 story building they are erecting, a lot of other people’s lives too)

The support our family has received has been overwhelming. It’s humbling. There have been many times this past year when I had the feeling I was in a boat with no oars headed for the falls. And someone on this email list would step up. With a meal for the kids, a kind email, a text, whatever. I can’t thank everyone enough. I wouldn’t recommend this experience for anyone. It’s like recording your life, live. There aren’t do-overs or rehearsals. We made some mistakes along the way, but overall, I’m incredibly happy and think our little family was chose by the “Big Man” for a reason. To see our littlest one, Caroline, bopping around Dana Farber, not afraid, is a gift in its own right.

So, we are closing this chapter. And starting another. Patrice’s hair is growing back. She looks and feels better than she has in years. And, she and the kids are headed back to NY for the summer to pick up right where we left off.

A final thought. If you read the blog in January, there was a security guard that I used to give the “knuckles” to each night when I left the hospital. He had no idea who I was but after a week or so, he caught on. Well, I was hoping he was there today. Sure enough, on our way to the car, there he was at the same post. I walked up to him and gave him the knuckles. Not surprisingly, he returned the knuckles and I explained to him who I was (it took him a second then he was beaming) – when I turned to introduce Patrice, I told him this was my beautiful wife who was in the hospital all that time and that she’s on her way to recovery. We both turned to look and Patrice was smiling and as beautiful as ever, and he just mumbled to us,

“God is good, man, God is good.”

Enjoy the Summer!!!

=========

And I would say, many many blessings on all the people who were called to go into medicine, to produce this kind of result. It is about saving lives, it is about changing the course of disease. And when it works like this, it means there will be a mom at four high school graduations, a mom who might not have been there.

I can't type that without getting lots of tears in my eyes. Blessings indeed on all of you who do this work.

Declaration of Health Data Rights

2009-06-22T21:13:00.011-04:00

A great thing is being announced as I write this: a declaration of health data rights. On the surface it's simple and seems not controversial:

A Declaration of Health Data Rights

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

Have the right to our own health data
Have the right to know the source of each health data element
Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

Seems obvious, right? In reality, it can be difficult to get your data, especially if you want it promptly because you're in trouble.

Current regulations require that you be given your records on request, but they can take up to two months to do so, and they can charge various amounts. One woman I know, whose husband died of Stage IV kidney cancer last week, was charged 73 cents a page (the records contained numerous mistakes and unfilled orders), and in Texas they can charge $37 for the first ten pages. If you've ever been under financial stress from medical hardship, you know what a grotesque thing that is to do to a patient's family.

On top of that, in some states (e.g. Virginia), laws prevent you from getting the results of your own lab tests; the law says the data can only be given to the doctor who ordered it. (I can only guess who wrote THAT law.) In a timely coincidence, today this article appeared in Archives of Internal Medicine: Patients Often Not Told About Abnormal Test Results, including this:

The failure of doctors and medical facilities to follow-up and give people test results is "relatively common," the researchers wrote, even when the results are abnormal and potentially troublesome, and affects one of every 14 tests."

All of this reflects an assumption, unspoken or not, that you have no real right to your data, and you're putting them out by requesting it. I disagree.

In endorsing this declaration, tonight I wrote:

These rights are as inalienable as the right to life itself.

Whose life depends on the data's accuracy, its availability?

Whose data is it, anyway?

For more information including the list of endorsing organizations, see HealthDataRights.org. To endorse it yourself, click the big orange "endorse this" button or just click here. To see the 800+ endorsements so far, click here.

Christensen: "The traditional general hospital is not a viable business model"

2009-06-17T12:50:00.004-04:00

Last week I was fortunate to meet Clay Christensen at a CEO Roundtable breakfast at my hospital, Beth Israel Deaconess. I didn't get to ask the questions that some of you proposed on my previous post, but that will come later. For now, I want to share something that I wrote ad hoc this morning.

Paul Levy, CEO of the hospital, says on his blog that he's been thinking a lot about something Christensen said: "The traditional general hospital is not a viable business model." He pointed out that these hospitals only survive through philanthropy and government funding, i.e. taxes. As you might imagine, this could be problematic to a hospital CEO :-), and Paul expresses his thoughts well, as usual.

He ends by talking about a key concept in the Obama administration's thinking about healthcare reform: "Accountable Care Organizations," or ACOs. There is a concern that this good concept, modeled on the great success of transformed organizations like Kaiser-Permanente, Mayo, and Geisinger, could be perversely applied to untransformed hospitals. I don't know much about the ACO issue, but something about the discussion struck me, and I posted this as a [long] comment. Here it is, with a little editing to touch it up.

----------

I'm going to (yet again) try to express something in an area where I know I'm way over my head.

Isn't there an irony in "accountable care organization"? In business (the kind of business Christensen has studied) leaders know they're accountable to the market because if they don't improve their offerings, someone else might. It may be with the occasional rare disruptive innovation or with the usual non-disruptive improvements, but if you snooze you lose; if you get complacent you can get blind-sided; etc etc etc.

To my naive eyes, this form of accountability (improve services or die) seems absent from healthcare delivery systems largely because it's so hard to enter this market, so any dominator can be as bloated as it wants, and (whether they realize it or not) the managers end up with an attitude of "recipients [consumers] be damned, there's nothing we can do about it."

It's basically the same thing GM executives told Congress in the 1960s. "It's simply not possible to build a better car. We should know; we're the experts."

The thing is, this isn't sustainable: it appears that collapse is coming. PCPCC has been saying for years that HC costs have reached a "game over" scenario (growing faster than employers' earnings), and I recently heard that through May 31, for the first time in history enrollment in US health plans is DOWN 5% year to date.

Given that this is an industry that generally has no experience at significantly tightening its belt while delivering the same result, there's going to be a lot of pain as the collapse begins. Pain in the industry and pain among the consumers who can't get care.

The Globe op-ed page the other day had a block with a few one-line quotes. One guy said "I pay for what prescriptions I can, and beyond that I trust in God." Great work, healthcare industry. Thanks.

Anyway, yeah, I love Clay's message, because it's the first perspective I've seen that (in my interpretation) comes down to "Look, you guys, whether you like it or not, your leviathan selves are headed for a cliff. It's up to you whether you want to take action before or after that happens."

In a recent post on e-patients.net, ACOR founder Gilles Frydman (who knows a few things about what patients do when their needs aren't being met) wrote Will the Great Recession Create Millions of e-Patients? As people stay unemployed (and thus uninsured) long enough that life's illnesses arise, they'll be fending for themselves. They (we) will band together and do what we need, to help each other.

And that brings me to the one thing I think is missing from Clay's prescription. The third part of his mix is patient communities for chronic conditions such as diabetes. What he doesn't predict is something that already exists: patient communities for everything else.

One example is ACOR (communities of cancer patients), where patients often share information that's less well known, sometimes even unknown to their physicians. Another is PatientsLikeMe, where patients band together because the establishment is out of answers for their condition. And mark my words, another will be patients who've been priced out of the market and, more or less desperately, need care for themselves, their kids, their parents.

Christensen talks about the inexorable shift of value from decentralized to centralized and back out to decentralized. What he hasn't mentioned yet is the value that's being generated in the ecosystem completely off the grid. When consumers start to get what they need without even getting in the game, an industry's foundation crumbles.

Because, after all, what drives disruption in the first place (what drives all innovation) is whether consumers' needs are being met efficiently. Increasingly in this game, the needs aren't being met at all.

Let's discuss Clay Christensen's "Innovator's Prescription"

2009-06-06T23:55:00.009-04:00

I want to start a discussion among people who've read, or are reading, Clay Christenson's Innovator's Prescription.

Harvard Business School professor Clayton Christensen is, arguably, the most important observer of what makes some technical changes take off and others not. He's the one who created the concept of "disruptive innovation."

It's important to understand that "disruptive" in this sense is not about being socially disturbing or rebellious, it's about developing a new solution that comes from a new direction, rather than being a continuation of the "same-old same-old." The Wikipedia article has good examples of what is and isn't disruptive, in this sense.

In my own career, I witnessed the disruption of the typesetting industry (where I worked) by desktop publishing, which let consumers get what they needed without going through conventional typesetters. To be sure, it was painful to watch my industry die, but die it did – because customers wanted more than we were giving them in service and value.

Because disruption generally rejects the establishment, it's often accompanied by denial on the part of the dominant technology; in my case, we in typesetting said "Our craft is full of skill and knowledge; it takes years to get good at it. Desktop publishing is a toy. It has none of our professional features." But it turned out that consumers were happy to make do with something they could do themselves at a fraction of the cost.

And – and this is pivotal – as the use of desktop publishing spread, its features grew: it became not just a toy. We in typesetting watched the list of our advantages shrink. It was an extreme case, because our entire industry pretty much disappeared in about five years.

Christensen introduced the disruptive concept in 1995 after studying the rapid evolution of disk drive technology. He's since applied it to many industries, and it's been said that entire new national economies have used it (successfully) to plan growth strategies.

But he says his hardest project "by a full order of magnitude" has been to understand healthcare. He's been working on it for ten years – most of the time since he developed the concept – and his healthcare book was just published this February. Importantly, he's not just a techie geek who rejects the medical establishment. He worked closely with some serious doctors, who concur with his conclusions.

But not everyone does agree. One doctor I highly respect says Christensen "nailed the diagnosis but blew the prescription."

I want to discuss it here because I'm someone who's not mired in the industry, but who HAS seen industries get disrupted, and it seems screamingly obvious to me that US healthcare is ripe for disruption. Although its services are life-saving (I'm an example of that), the work is overpriced, consumer satisfaction is very low, people generally can't get what they want when they want it, yet prices keep going up, to the point where some people and some employers are just saying "Screw it" and going without. (Recent statistics have pointed to increases in both; I'm too tired to dig out the links, but it's real, especially for small businesses and all their employees. The healthcare system is pricing itself out of a job.)

Dr. Alan Greene, president of the Society for Participatory Medicine, often mentions in his speeches that healthcare is a bubble, not unlike the internet bubble that popped a while ago. He talks about Disruption and the healthcare bubble. That's an excellent little post – please read it if you want a deeper understanding of what' s up.

I'm only partway through the book, and my free time for reading has been unpleasantly low, so I'd like to hear the thoughts of those who've read it। If you have, please comment.

Quick start: see the reader reviews on Amazon.

Sequel: Christensen: "The general hospital is not a sustainable business model"

"Give us our data": My talk at the NeHC board meeting 6/2/09

2009-06-06T23:30:00.001-04:00

Cross-posted from the e-patient blog.

Last Tuesday, June 2, I was on a consumer panel at a board meeting of the National eHealth Collaborative. This is a heady group to be addressing; as this press release says, nine of these people are on the advisory committees that are working directly with David Blumenthal, Obama's National Coordinator for Health IT, to set policy and standards.

My deepest, sincerest thanks to Steve Findlay of Consumers Union, who invited e-patients.net to be on this panel. What a radical idea: have a consumer on a consumer panel! It's so good to see the skies opening in this way.

The topic was whether "consumer pull" would encourage healthcare providers to adopt electronic medical record systems (EMRs). (Like, if you and I keep asking our doctors and hospitals to let us see our data online, will they be more likely to get off their butts and GET our data online??)

All I can say is, if I have anything to do with it, consumers (that's you) will be clamoring to see their medical records, both to check their accuracy and for the reason I sent my data to Google Health in the first place: to get involved in their care, to be responsible, to participate.

Go thou into the wilderness and clamor for access!

Here are the slides I used, with a few more added to make it a self-running presentation. Some of the text is small, so take it to full screen:

e-Patient Dave's presentation to NeHC board June 2 2009

View more presentations or Upload your own.

The panel was videotaped. (It's not available in embeddable format yet.) My portion starts at 34:09.

Video of consumer panel at NeHC board, June 2, 2009

The other panelists were phenomenal; I learned a ton from their expert observations. Some of it was over my head until I listened a couple of times; they have years of experience in these policy discussions. All I know is, I want us to have access to our own damn data. :–)

By the way, a big thank-you to SlideBoom.com, the free service that converted my slides for posting here, including my animations and slide transitions, which cause fits for most such services. Good tool!

IBM to announce results of Medical Home project

2009-05-20T22:50:00.008-04:00

On Tuesday I was invited onto a blogger conference call hosted by IBM to discuss the Medical Home concept. I was immensely happy that IBM had the vision to invite a plain old ordinary patient to be on the call. Good for them!

As longtime readers know, I've written about the medical home concept several times. It's about the fact that so many people lack a plain old ordinary doctor's office where they KNOW you – a medical "home," as it were. (Or, as they say on Cheers, "Where everybody knows your name.")

Everyone else on the call was "in the business," and as it happens, the slides were far more "in the business-y" than I would have preferred. (They're posted below.) To get a concept like this into the skulls of the Very Smart Important People in government, it seems they have to talk in abstractions and Big Principles.

Suggestion: How about also including some street reality common sense facts? Like, people who have a medical home are half as likely to have a heart attack! That statistic was mentioned (in passing!) by IBM's Dr. Paul Grundy (who's become something of a buddy of mine) at the start of the call, but wasn't considered relevant enough to put in the slides!

See, IBM employs a LOT of people so they have a LOT of data about what works. 6-8% of their insured employees are in a Medical Home plan, and that's the result IBM has seen.

Wouldn't you like to be in a plan with that kind of results? Doesn't cost anymore, either. So what the heck is everyone else thinking, and what are they waiting for?

Hey IBM ... Since I'm officially a patient advisor to PCPCC, here's some advice :-)

Let's also start some grass-roots demand for the medical home concept. (I'll start, by telling people here.)
Somebody remember the 7/30 rule of slides: no more than 7 lines of 30 characters. More than that doesn't get read. :-)

Thanks for inviting a patient – I want to help this cause win.

Here are the slides:

IBM Briefing: Patient-Centered Medical Home - What, Why and How?

View more presentations from Ibm (ibv) Institute for business value .

BIDMC's Dr. Andrew Wagner on surgery options for kidney cancer patients

2009-05-12T14:40:00.024-04:00

Dr. Andrew Wagner, the surgeon who brilliantly removed my kidney (which had tumors sticking out on two sides), kindly agreed to discuss the options available to kidney cancer patients.

I'm putting the audio here in two versions. First, here's my attempt using Utterli, a new website that lets you upload any kind of audio.

Here's another copy from the BlogTalkRadio web site where I recorded it:

Dr. Wagner is co-chairman of the renal tumor program at my hospital. A five minute video about that program, and how it brought me back from the brink, is here. The program's web site, with contact info for the doctors, is at www.bidmc.org/renaltumor.

Update 12/29/09: In response to a discussion in my patient group on ACOR.org, I asked Dr. Wagner for some additional thoughts. His response is here.

Next in this series – June 2009: Dr. David McDermott discusses medical treatment options.

Rally in support of those imprisoned for expression

2009-04-26T20:12:00.003-04:00

A group of bloggers is holding a blog rally this week to support this cause. I'm joining in. The blog post where this started is here: Bloggers Are Dying.

The Universal Declaration of Human Rights states, "Everyone has the right to freedom of opinion and expression; this right includes freedom to hold opinions without interference, and impart information and ideas through any media regardless of frontiers."

Journalist Roxana Saberi has been incarcerated in Tehran's Evin Prison, where she is spending her birthday on a hunger strike. Around the world, people continue to face similar violations of their rights to freedom of expression, free speech, and a free press. Let's show the international community that we won't be silenced by intimidation and tyranny - that we won't stop believing in and fighting for these rights.

Freedom of the press is not a luxury. It lies at the heart of making this world healthier and more just. People without a voice and without a clear line of sight into the things that would threaten or corrupt their societies cannot hope for equitable growth and meaningful change.

A group of bloggers is holding a blog rally in support of journalists, bloggers, students, and writers who have dared to express their thoughts freely and have been imprisoned, abused, or killed.

Please consider "wearing" a blue ribbon online this week on your blogs, websites, and facebook / myspace / twitter pages, and invite others to do the same. Get the discussion going, and keep it going!

How Bacteria Communicate (fantastic new TED talk)

2009-04-11T08:23:00.002-04:00

In case you haven't heard yet, TED (description) is an annual conference with 50 incredible talks, in 18 minutes, on a vast range of topics. They're usually amazing, and sometimes mind-blowing. Afterward they're collected on the TED Talks web site.

This one was just posted this week. Bonnie Bassler's team of students at Princeton has found that bacteria, those little single-celled things, communicate with each other. The implications are, to say the least, stimulating.

My favorite other TED talks:
A Neuroanatomist Witnesses Her Own Stroke (posted here a year ago)
Hans Rosling and his incredible software for visualizing data (2006)
Eva Vertes, 19 year old on her new approach to cancer

Blog Rally to Help the Boston Globe

2009-04-07T03:00:00.003-04:00

All of us in Boston read last weekend about the threat of possible closure faced by the Boston Globe. A number of Boston-based bloggers who care about the continued existence of the Globe have banded together in conducting a blog rally. We are simultaneously posting this paragraph to solicit your ideas of steps the Globe could take to improve its financial picture.

"We view the Globe as an important community resource, and we think that lots of people in the region agree and might have creative ideas that might help in this situation. So, here's your chance. Please don't write with nasty comments and sarcasm: Use this forum for thoughtful and interesting steps you would recommend to the management that would improve readership, enhance the Globe's community presence, and make money. Who knows, someone here might come up with an idea that will work, or at least help. Thank you."

Imagine someone had been managing your data, and then you looked.

2009-04-04T08:32:00.006-04:00

This is cross-posted from the e-patient blog. I wrote it as my own somewhat astonished observations, but I had no idea how much uproar it would create. The commenters added a lot, so if you're interested in this subject, go there and look.

This is a complex post, so don’t jump to any conclusions.

Two weeks ago (gad, was it that long?) I asked you to think about something for a few days:

Imagine that for all your life, and your parents’ lives, your money had been managed by other people who had extensive training and licensing. Imagine that all your records were in their possession, and you could occasionally see parts of them, but you just figured the pros had it under control.

Imagine that you knew you weren’t a financial planner but you wanted to take as much responsibility as you could – to participate. Imagine that some money managers (not all, but many) attacked people who wanted to make their own decisions, saying “Who’s the financial planner here?”

Then imagine that one day you were allowed to see the records, and you found out there were a whole lot of errors, and the people carefully guarding your data were not as on top of things as everyone thought.

Two weeks before that post, I’d had a personal breakthough in my thinking. For a year I’d been a rabid enemy of Google Health, but now I said: I’m putting my data in Google and HealthVault: “I’m concluding that we can do more good by aggregating our data into large, anonymized databanks that smart software can analyze to look for patterns. Early detection means early intervention means fewer crises.”

And I observed that the power of Web 2.0 “mash-ups” …

…lets people create software gadgets without knowing how they’ll be used, it lets people build tools that use data without knowing where the data will come from, and it lets people build big new systems just by assembling them out of “software Legos.”

So, I said, “I’m in.” I decided to punch the big red button and copy my personal health data into Google Health.

What happened is the result of PatientSite's "version 1" implementation, not their eventual full implementation, of the interface. To my knowledge, zero or one other hospitals have any interface at all, and as I'll say later, I'm not even sure how much of the Google Health side of the connection is complete. Nonetheless, what I learned about my own data was quite informative, and quite surprising.

(I've discussed what follows with hospital staff; this isn't gossip behind anyone's back. IMO, empowered people don't gossip, they communicate clearly and directly with the people involved.)

When Google Health launched last May, my hospital’s CIO blog said “we have enhanced our hospital and ambulatory systems such that a patient, with their consent and control, can upload their BIDMC records to Google Health in a few keystrokes. There is no need to manually enter this health data into Google's personal health record, unlike earlier PHRs from Dr. Koop, HealthCentral and Revolution Health.”

So I went into my patient portal, PatientSite, and clicked the button to do it. I checked the boxes for all the options and clicked Upload. It was pretty quick.

But WTF? An alarm: "! Requires immediate attention"

Okay, yes, HCTz is my blood pressure medication.

But low potassium? That was true when I was hospitalized two years ago, not now. What’s going on?

Then I saw the list of “conditions” it told Google I have. Here's a partial screen grab:

And here's the complete list that PatientSite transmitted: (spoiler alert; this stuff is biological)

 Acidosis
Anxiety Disorder
Aortic Aneurysm
Arthroplasty - Hip, Total Replacemt
Bone Disease
CANCER
Cancer Metastasis to Bone
Cardiac Impairment
CHEST MASS
Chronic Lung Disease
Depressed Mood
DEPRESSION
Diarrhea
Elevated Blood Pressure
Hair Follicle Inflammation w Abscess in Sweat Gland Areas
HEALTH MAINTENANCE
HYDRADENITIS
HYPERTENSION
Intestinal Parasitic Infection
Kidney Problems Causing a Decreased  Amount of Urine to be Passed
Lightheaded
Low Amount of Calcium in the Blood
Low Amount of Potassium in the Blood
Malignant Neoplastic Disease
Migraine Headache
MIGRAINES
Nausea and Vomiting Nephrosis
PSYCH
Rash
Spread of Cancer to Brain or  Spinal Cord
Swollen Lymph Nodes

Yes, ladies and germs, it transmitted everything I’ve ever had. With almost no dates attached. (It did have the correct date for my very first visit, and for Chest Mass, the x-ray that first found the undiagnosed lesion. But the date for CANCER, the big one, was 5/25/07 – four months after the diagnosis. And no other line item had any date. For instance, the "anxiety" diagnosis was when I was puking my guts out during my cancer treatment. I got medicated for that, justified by the intelligent observation (diagnosis) that I was anxious. But you wouldn't know that from looking at this.)

See how some of the listed conditions have links for More Info? Let’s see, I was diagnosed with optical migraine, an odd symptom that produces a little dazzling pattern in one eye occasionally. (See illustration; it happened for a brief period and stopped.) (I diagnosed myself, actually, by researching my symptoms and finding this illustrated site. That’s what e-patients do; it saves time in the doctor’s office… I brought a printout, with a dated list of episodes.) But optical migraine is not the impression you’d get from reading my Conditions list – in fact during my cancer workup one resident said “But you have headaches, right?” “No,” I said – “optical migraines, but without pain.”

So for that item in the conditions list, I clicked More Info. I didn’t get more info (i.e. accurate info) about my diagnosis, just Google’s encyclopedia-style article about migraines in general. (An optical migraine has little in common with migraines in general.)

The really fun stuff, though, is that some of the conditions transmitted are things I’ve never had: aortic aneurysm and mets to the brain or spine.

So what the heck??

I’ve been discussing this with the docs in the back room here, and they quickly figured out what was going on before I confirmed it: the system transmitted insurance billing codes to Google Health, not doctors’ diagnoses. And as those in the know are well aware, in our system today, insurance billing codes bear no resemblance to reality.

(I don’t want to get into the whole thing right now, but basically if a doc needs to bill insurance for something and the list of billing codes doesn’t happen to include exactly what your condition is, they cram it into something else so the stupid system will accept it.) (And, btw, everyone in the business is apparently accustomed to the system being stupid, so it’s no surprise that nobody can tell whether things are making any sense: nobody counts on the data to be meaningful in the first place.)

It was around this time that I commented on Ted Eytan’s blog, “when you’re exporting to a new system, the rule is, Garbage Out, Garbage In. (Hint: visibility into the data in your old system may leave you aghast.)”

We could (and will someday) have a nice big discussion about why the hell the most expensive healthcare system in the world (America’s) STILL doesn’t have an accurate data model, but that’s not my point. We'll get to that.

And now we get to why I said, at the outset, don’t jump to conclusions. I’m mildly bitching about PatientSite, but that alone wouldn’t justify staying up to 3 in the morning writing a 2800 word post; that one system isn't a big deal for e-patients everywhere. (And besides, although PatientSite is old and clunky, a 1999 system if I ever saw one, it beats what most hospitals offer, and it did the job very well for me during my illness. And this is just version 1 of the interface; the current folly is not a permanent situation.)

The BIG question is, do you know what’s in your medical record? And THAT is a question worth answering. For every one of you.

See, every time I speak at a conference I point out that my 12/6/2003 x-ray identified me as a 53 year old woman. I admit I have the man-boob thing going on, but not THAT much. And here’s the next thing: it took me months to get that error corrected, because nobody’s in the habit of actually fixing errors.

Think about THAT. I mean, some EMR pontificators are saying “Online data in the hospital won’t do any good at the scene of a car crash.” Well, GOOD: you think I’d want the EMTs to think I have an aneurysm, anxiety, migraines and brain mets?? Yet if I hadn’t punched that button, I never would have known my data in the system was erroneous.

And this isn’t just academic: remember the Minnesota kidney cancer tragedy just a year ago, which arose at least partly out of an error that ended up in the hospital’s EMR system. Their patient portal allowed patients and family to view some radiology reports, but not the one that contained the fateful error.

The punch line came when I got over my surprise about what had been transmitted, and realized what had not: my history. Weight, BP, and lab data were all still in PatientSite, and not in Google Health.

So I went back and looked at the boxes I’d checked for what data to send, and son of a gun, there were only three boxes: diagnoses, medications, and allergies. Nothing about lab data, nothing about vital signs. (So much for “no need to manually enter this health data into Google's personal health record.”)

And of the three things it did transmit:

what they transmitted for diagnoses was actually billing codes
the one item of medication data they sent was correct, but it was only my current BP med. (Which, btw, Google Health said had an urgent conflict with my two-years-ago potassium condition, which had been sent without a date). It sent no medication history, not even the fact that I'd had four weeks of high dosage Interleukin-2, which just MIGHT be useful to have in my personal health record, eh?
the allergies data did NOT include the one thing I must not ever, ever violate: no steroids ever again (e.g. cortisone) (they suppress the immune system), because it’ll interfere with the immune treatment that saved my life and is still active within me. (I am well, but my type of cancer normally recurs.)

In other words, the data that arrived in Google Health was essentially unusable.

And now I’m seeing why, on every visit, they make me re-state all my current medications and allergies: maybe they know the data in their system might not be reliable. Hey wait, a new article in the Archives of Internal Medicine (co-authored by our own Danny Sands, my very own primary) says Clinicians override most medication alerts. Could it be they've been through this exercise themselves, and they consider the data unreliable? (Or do they just not trust computers?) (Hey Pew Internet, wanna check for generational differences?)

Who knows, perhaps the resident in the migraine story has learned early on that the data in his system is not to be taken at face value – I don't know.

In any case, my hospital is very proactive and empowering to staff about root cause analysis for failures, with its "SPIRIT" program, and they’ll add any process or form that can catch potential errors. That’s good.

But wait: On numerous visits, I’ve restated on those forms “no steroids.” But evidently what I write on the forms never gets entered into the system. Hm.

I work with data in my day job. (I do marketing analytics for a software company. We import and export data all the time.) I understand what it takes to make sure you’ve got clean data, and make sure the data models line up on both sides of a transfer. I know what it’s like to look at a transfer gone bad, and hunt down where the errors arose, so they don’t happen again. And I’m fairly good at sniffing out how something went wobbly.

And you know what I suspect? I suspect processes for data integrity in healthcare are largely absent, by ordinary business standards. I suspect there are few, if any, processes in place to prevent wrong data from entering the system, or tracking down the cause when things do go awry.

And here’s the real kicker: my hospital is one of the more advanced in the US in the use of electronic medical records. So I suspect that most healthcare institutions don’t even know what it means to have processes in place to ensure that data doesn’t get screwed up in the system, or if it does, to trace how it happened.

Consider the article in Fast Company last fall, about an innovative program at Geisinger. Anecdotally, it ended with this chiller:

… a list of everybody that accessed the medical record from the time he was seen in the clinic to two weeks post-op.'There were 113 people listed -- and every one had an appropriate reason to be in that chart. It shocked all of us. We all knew this was a team sport, but to recognize it was that big a team, every one of whom is empowered to screw it up -- that makes me toss and turn in my sleep."

In my day job, our sales and marketing system (Salesforce.com) has very granular authorizations for who can change what, and we can switch on a feature (at no extra cost) to track every change that’s made on any data field. Why? Because in some business situations it’s important to know where errors arose – an error might cause business damage, or an employee might sue over a missed quota.

So I’m thinking, why on earth don’t medical records systems have these protections? If a popular-priced sales management system has audit traces, to prevent an occasional lawsuit over a sales rep’s missed commission, why isn’t this a standard feature in high-priced medical records systems?

In any case, in the several weeks since these discoveries started, as far as I know they haven’t figured out how my wrong data got in there. And without knowing how the wrong data got in, there’s not a prayer of identifying what process failed.

BUT AS I SAID, this is not about my hospital; a problem at my hospital affects only one scrillionth of patients in the US, not to mention the rest of the world And please don’t blame my hospital’s CIO; I think what he wrote about the Google Health interface was overzealous, but I believe he’s a good man, committed to helping us own our own data (his work on the Google Health advisory board was unpaid), and this post isn’t about him: as far as I know, this hospital is farther along than anyone else: hardly anyone else has implemented a Google Health interface. (Perhaps for good reason.)

Nor is this a slam on Google Health. I haven't probed yet into whether there are limitations in what it does; might be fine, might not. Heck, neither PatientSite nor I have put any good data into it yet. (And I haven't even touched HealthVault.) None of that is my point.

Rather, my point is about the data that was already in my PHR, uninspected. For that, let’s return to my previous post:

Then imagine that one day you were allowed to see the records, and you found out there were a whole lot of errors, and the people carefully guarding your data were not as on top of things as everyone thought.

In my day job, when we discover that a data set has not been well managed, we have to make a decision: do we go back and clean up the data (which takes time and money), or do we decide to just start “living clean” from now on?

My point, my advice to e-patients, is:

Find out what’s in your medical record. What’s in your wallet, medically speaking? Better find out, and correct what’s wrong.
Get started, manually, moving your data into Google Health, HealthVault, or some such system. I’ve heard there are similar PHR systems (personal health records), not free but modestly priced, that can reportedly make this easier. I’m sure their friends will show up here in the comments. (Feel free to post product info links in the comments, everyone.)
Let’s start working, now, on a reliable interoperable data model. I know the policy wonks are going to scream “Not possible!” and I know there are lots of good reasons why it’s impossibly complex. But y’know what else? I’ve talked to enough e-patients to be confident that we patients want working, interoperable data. And if you-all in the vendor community can’t work it out, we will start growing one. It won’t be as sophisticated as yours, but as with all disruptive technologies, it will be what we want. And we’ll add features to ours, faster than you can hold meetings to discuss us.
I have to say, while researching this post I was quite surprised at how very, very far the industry has to go before reaching a viable universal data model. New standards are in development, but I'm certain that it will take years and years and gazillions of dollars before any of that is a reality. (What, like costs aren't high enough already?) In the meantime, your data is probably not going to flow very easily from system to system. Far, far harder than (for instance) downloading your data to Quicken from different credit card companies and banks.
(Wizards and geeks refer to this "flow" issue as "data liquidity." We'll talk about that in the future.)
Let’s start working, now, on an open source EMR/PHR system. The open source community creates functionality faster, and more bug-free, than commercial vendors do – and nobody can latch onto proprietary data in such systems to milk more margin out of us... because it ain't proprietary.

The great limitation of open source is that it’s generally not well funded. But you know what? Every person in America (including software engineers) is motivated to have good reliable healthcare systems, and I assert that the industry ain’t getting’ it done on their own. As I said in my Thousand Points of Pain post (cross-posted on IBM’s Smarter Planet blog as A business thinker asks, what will it take to get traction?), it’s fine with me if industry vendors come along too – but I would not stake my life on their moving fast enough for my needs. Or your mother's.

Want a case study with real consequences? Recall what happened last year to famed Linux guru Doc Searls when he couldn’t read his own scan data, because good cross-platform image viewing tools weren’t available. (His prescription: the patient should be the platform and “the point of integration.”)

Well, okay, so Doc was a year ahead of me. I'm catching on. This illustrates why I think people from outside the profession may be our greatest asset in building what patients really need: patients tend to build what they want. And we who work with data all day know that these problems are not unsolvable.

My bottom line: I think we ought to get our data into secure online systems, and we shouldn’t expect it to happen with the push of a button. It’ll take work. So let’s get to work.

You know the work will be good for you, and heaven only knows what you’ll learn in the process. You’ll certainly end up more aware of your health data than when you started. And that’s a good thing.

Trust yourself. You know more than you think you do.

2009-03-28T20:36:00.004-04:00

In the new Society for Participatory Medicine we assert that patients have a lot to contribute to their well-being and to their own care, and ought to do so.

We know some folks can't quite believe that, or aren't quite comfortable with the idea. So we scoured the earth for the newest, most radical thinker's opinion on this. His words are on the fridge magnet that I bought the other day at Whole Foods Market: "Trust yourself. You know more than you think you do."

No, wait ... that's Dr. Benjamin Spock, writing the very first words of his classic baby book.

In 1946.

A new dimension in doctor-patient collaboration :-)

2009-03-27T07:51:00.007-04:00

I was emailing yesterday with Dr. Sands about our videotaping Saturday (see below). The producer was advising us on wearing camera-friendly clothes, and he said not to wear bright white. We'll pick this up mid-stream. How rude.

----- Original Message -----
From: "Tom"

The Navy jackets are fine. I was more worried about the shirts. Often, people take off their jackets and have white shirts for their taping.. Muted colors are cool blues and green, grays, tan, some pastels,and other colors that are not white or too bright.

----- Original Message -----
From: "Dave deBronkart"

I'm not takin' off my jacket.... as my doctor (ahem) knows, my profile looks MUCH better in a coat.

Seriously. I get higher ratings as a conference speaker when I keep my jacket on.

----- Original Message -----

From: "Danny Sands (dzsands)"

And the rest of your clothes, for that matter...

----- Original Message -----
From: "Dave deBronkart"

Hey! Did I just witness a violation of doctor-patient confidentiality???

I feel a blog post comin' on.

Gone are the days when all power resided in the medical office, buster. Today we are free to TALK.

Come be in the studio audience for the live taping of "Illness in the Age of E"

2009-03-23T20:47:00.029-04:00

UPDATE 3/26: Directions have been added in a comment below.

This Saturday, March 28, Dr. Danny Sands and I will videotape the presentation we've given twice before: "Illness in the Age of E: A Case Study in Participatory Medicine." We're looking for interested, engaged people to be in the studio audience.

I first became Danny's patient in 2003. He's my kinda guy because he thoroughly believes in using the internet and he thoroughly believes in patient empowerment. This all turned out to be a really good thing several years later, when a routine shoulder x-ray showed an ugly cancer that had spread to my lung.

In the talk, we share the story of how we used the internet in every way possible: email, accessing my medical records online from home, sharing my login with others who could help, joining a patient community, forming a terrific support group in my online journal, even emailing diagnostic photos in one case.

People have said it's a moving, inspiring talk that opens the mind to a new realm of what's possible when patients are actively engaged in their care, and when health professionals support patients in taking a participatory role. Danny and I are both experienced business speakers, and we've designed the talk to be of value to professionals and patients alike.

We need a head count! RSVP to epatientdave at e-patients.net. It's at Bryant College in Smithfield, R.I. from 11 to 12.

Everyone's invited: patients, family, caregivers, doctors, nurses, hospice workers, Federal health officials, everyone. The only prerequisite is that you care about the future of healthcare.

Which, by the way, just might affect you some day. So get with it!

Reality is what it is, regardless of what we think

2009-03-22T14:17:00.010-04:00

It's come time for me to say publicly something I've been saying since the beginning of my cancer case 26 months ago. It has to do with the power of our attitude, how we choose to view our circumstances.

Reality is what it is,
whether we know it or not,
and regardless of what we think.

In my community of other kidney cancer e-patients on ACOR, people are repeatedly faced with news they never wanted to hear, uncertainty, circumstances they were not raised to deal with. I know what that feels like, and no matter what your circumstances are today, chances are good that you too will face this – for yourself, a parent, a child, a loved family member, a loved friend.

Reality is what it is, whether we know it or not. For instance, as I'm fond of saying, "Oxygen was real and was doing its thing, long before Joseph Priestley figured out how it works." Among other things, this realization helps understand that we may have access to all kinds of things that science hasn't discovered yet. It also highlights that disempowering thoughts are useless, so why bother?

The other day in my ACOR community a woman named Sally (not her real name) wrote a note titled "Question for caregivers whose loved ones have passed," wondering about the decisions she and her husband are facing along the way. Here's my response.

Sally, I feel for you. I well remember those days in my case, knowing that what we had to do was educate ourselves and assess our choices. There was no way to know how it was going to turn out. It felt desperate at times. I'll never forget reading those words on the web pages for my disease: "Outlook is bleak." "Prognosis is grim."

I think everyone deals with this differently. After the initial shock I found myself saying "reality is what it is, whether we know it or not. I had cancer before the diagnosis; I have cancer after the diagnosis. The main difference is that now I know it. This is scary, but it also means I have much better ability to deal with it. What are my choices?"

With that approach, I had the experience that knowing I have cancer is empowering and enabling, MUCH better than not realizing it.

(I should note that for years I've taken courses from Landmark Education, a personal growth company that among other things teaches us to be clear about the difference between how things are and our thoughts about them.)

As I say, everyone's different. I personally have a strong gut feel that attitude makes a big difference, and the relatively new field of psycho-neuro-immunology supports this: they're studying how mood/attitude (psych) affects the nervous system (neuro) which ties to the immune system. There's real evidence now that attitude can boost the immune system. So I want my attitude to be strong, action-oriented, rather than victim-oriented.

Some might rightly say I'm a "victim" of cancer but for me there's no use in that.

We know that thousands of years ago the function of our anxiety was to help us be alert when a tiger might be about to pounce, so we could take action. Today, when we learn we have cancer, we get anxious and we take action. Beyond that moment, the anxiety has outlived its usefulness. So sometimes I'd remind myself "Yes, this stinks. Thank you for the alarm, Mr. Anxiety. Now, what are my options?"

All the while, I knew these really might be my end days. But there was no use for any other attitude than "what are my options?" With the attitude I chose, I became better able to fully experience life if it DID turn out to be my end days.

I also found that being in touch with my community (family, online CaringBridge journal, etc) about my status, thoughts, and feelings would help clear my mind. From them, I got back messages of support and encouragement. And some of them said "I can't believe you're being this way about it. You're amazing." And that left me feeling "Huh, maybe I can beat this thing, regardless of the odds."

Think about this,too: none of us knows how long we'll live, and patients with a fatal diagnosis have (oddly enough) the advantage of knowing that it's time to wake up and pay attention now. No sudden death for us, nosirree; we have advance notice.

My advice to patients everywhere, regardless of circumstance: Use your mind as an asset, not a liability.

No matter where you are in your journey, choose to be present in the moment, clear about your choices, and the master of your attitude.

Or, as my wonderful sister says about the game of life:
"Must be present to win."

Best intro to "health 2.0" I've seen

2009-03-18T21:43:00.009-04:00

At the TEPR+ conference in February, where I spoke with my physician Danny Sands, I had the pleasure of meeting the venerable Dr. David Kibbe. An august fellow. Or so I thought. :)

See, I'd known David through his appearances on THCB (The Health Care Blog, where all the big-dog policy wonks hang out). He writes some seriously erudite (and wordy) stuff there, for instance his Open Letter to the Obama Health Team in December. And the reams of comments that he gets, from far wordier people, has usually meant that jumping into that sandpile over there has been more than I dared attempt.

So little did I know, until I met him, that David is One Of Us. Not only is he whole-heartedly into the bottom-up disruption of today's healthcare, in a wholly participatory empower-patient fashion, he's really good at story-telling and getting the idea across.

To illustrate that, here's a 16 minute "TV pilot" he put together to convey what "Health 2.0" is about. It's entertaining, stringing together interviews with some people I've met and others I haven't. (Oh, and did I mention he schemed up a way to weave it into a supposed motorcycle tour, making the whole thing a business deduction?)

I hope you enjoy it, and, more important, I hope you "get" what Health 2.0 is about: refocusing healthcare on us, out here in the real world, particularly in web-enabled ways, as opposed its previous focus inside the fortress. 16:38.

Please do drop me a comment so I have some idea what you think, y'all! I'm on a mission here - it's more fun if I have some idea whether it's working. :)

Extraordinary example of the mind's influence on well-being

2009-03-11T22:46:00.006-04:00

A friend writes: "If you ever needed an example of the mind's influence on disease, please see the figure at the bottom of page 3 here: Impact of exposure to war stress on exacerbations of MS. Wow."

The article is about relapses of multiple sclerosis during the Hamas war in Israel in 2006. The caption reads "Number of relapses per month. Eighteen relapses occurred during the 33 days of the war compared with one to six relapses in comparable time periods over the 12 months preceding the war. There was no increase in relapse rates during the 3 months that followed the war compared with the same period of the previous year."

Brings to mind a couple of thoughts:

It strongly reminds me that during my own illness, I put a high priority on the power of my state of mind. At all times, even when all the information was not encouraging, instead of pondering all that for no benefit, I asked myself (and often said in my online journal), "What could be said that would make a difference?"
Note: as those who read my journal know, I wasn't in denial – I'm talking about where I chose to focus my consciousness.
It reminds me, in a new way, of the sixties poster that said "War is bad for children and other living things."

Comprehending the US healthcare budget

2009-03-08T10:00:00.008-04:00

A classmate steered me to PageTutor, a website for website developers. It happens to have a great illustration that helps comprehend the enormous amounts of money people are talking about these days in bailouts. And healthcare.

Here's a million bucks' worth of $100 bills. (That's 100 packets of 100 bills; each packet is 1/2" thick.)

Here's 100 times as much - a million hundred-dollar bills, $100 million:

Ten of those - a billion:

And a thousand of those - a trillion. Check out the little dude, who's now in the bottom left corner:

And, ladies and gents, the US healthcare spend for 2008 was estimated to be 2.4 times that much. And growing.

This helps understand what I was talking about when I wrote A Thousand Points of Pain, about how much money is at stake in this industry. The problem is that when we try to trim costs, there's going to be a LOT of money at stake. A lot. And right wrong or otherwise, when we try to cut something out, somebody's going to hurt. And there will be resistance.

So as I said in that post, I'm not waiting for the system to reform itself: I think we need to get busy at building our own solutions. The system may well improve, which is fine, but I ain't waitin' for it.

(btw, that's a big part of why I decided to go ahead with Google Health and HealthVault, as I wrote last month. That has turned out to be a bumpy road... I'll be writing about that soon.)

What if, in tough times, leaders could treat workers as responsible adults, and workers proved them right?

2009-03-07T18:06:00.007-05:00

This warms my heart: management frankly discussing hard economic times with workers, eye to eye, adult to adult. From Paul Levy's blog, Friday, about the situation at Beth Israel Deaconess Medical Center:

Update on the economy and its effect on BIDMC

He suggests sharing pay cuts, and other sacrifices, to avoid as many layoffs as possible. (He's not the first leader to do this; it just warms my heart.)

Equally heartwarming is how the people have responded.

Town meetings @ BIDMC

As I read that second one, emotion swept over me, and I realized: this flies in the face of all the people who've told me over the years, "People will let you down. Watch."

I prefer to see the human spirit in its fullest, best expression. We can make it through hard times. It'll be hard and resolving the economic dilemma won't be quick. But I am so moved at good people's willingness to stick together and help each other - especially the strong favorable response to Paul's suggestion that they all take a bit greater cut to minimize the impact on the lowest-paid workers.

p.s. Please see the added comment below from the head of the Albert Schweitzer Institute, who works at BIDMC.

About the Renal Tumor Program at my hospital

2009-03-03T21:59:00.012-05:00

As some of you know, a while ago my oncologist and surgeon, David McDermott and Drew Wagner, asked if I'd be willing to be videotaped talking about what I think about the Renal Tumor program they offer. Well, you know me – please don't throw me in that briar patch! Besides, since I feel pretty strongly that I owe them my life, the least I can do is tell the story to a million people or so.

In a couple of shots you can see my wife Ginny. And, very sharp-eyed long-time Bostonians may be able to recognize that the unnamed fellow in those shots is Gary Gillis, former sportscaster for WHDH-TV. He's the producer of this video.

More details about the Beth Israel Deaconess Renal Tumor Program are on their web site.

(As I write this, the video player is behaving very balkily for me. I don't know if it's my computer or the Brightcove video server. I expect they'll get it worked out.)

My day-job blog is live!

2009-02-26T16:44:00.001-05:00

Please visit my brand new day-job blog, No Lines, No Waiting.

I can't believe I finally get to do a blog during WORK HOURS!

I'm putting my data in Google and HealthVault

2009-02-22T14:08:00.035-05:00

I've decided to go ahead and put my data in Google Health and MicroSoft HealthVault.
(Note: MicroSoft HealthVault is a different kind of thing from Google Health. About the only thing they have in common is that I can put my health data in them. For this post I'll only discuss Google, but the concerns people have about the two are similar, and so are my thoughts.)

This is something of an earthquake on The Dave Planet. When Google Health was first announced in January 2008, I was completely distrustful and wrote What's next, Google Health??, concluding with this:

GOOG's stock is doing great and I love their free tools, but there's no way in hell I'm giving them sensitive personal data, regardless of what their policy says. New motto for 2008: Don't Be Stupid.

It was a direct slam against Google's long-professed unofficial motto "Don't Be Evil." I expressed my concern that Google might succumb to government pressure and dish out personal medical information that someone had entrusted to Google Health. I cited how Google had caved in to China's government, and how Google CEO Eric Schmidt had severely punished CNET.com for googling his personal information and publishing it. I saw hypocrisy.

Others agreed. One online forum discussed the potential for abuse, given that Google collects enormous information about each of us as we browse the web and use Google's search features – they know what you've searched for and (through ordinary marketing software that most web sites install) they know what sites you've visited.

They say they won't use that info; but... what if? What if an evil politician (take your pick: Dick Cheney, Hillary Clinton, Putin) puts the squeeze on Google to disclose such information so they can use it against you? That's less improbable than what actually did happen to Valerie Plame. In cases like that, laws will not protect you.

In online discussion groups, experts in "search engine marketing" joked about it: If Google knows you have a kidney problem, then the Google Maps "Street View" feature might point out potential donors, and the ads on the side of your screen might start promoting bathtubs and ice. (Yes, people did joke about that.)

That's a bit over the top, but you get the point.

Similar concerns continue today – this delightful image appeared on a ZDNet post this month, titled Is Google health corrupt?

So why have I gone over?

First, in the past year an increasingly wide range of people I trust have said "The data you're concerned about is already not as secure as you think." That doesn't leave me any more comfortable but I've come to accept that my choice of action won't make much difference.
Second, and more importantly, I'm concluding that we can do more good by aggregating our data into large, anonymized databanks that smart software can analyze to look for patterns. Early detection means early intervention means fewer crises.
Diabetics are already starting to do things like this. And the Cambridge MA-based PatientsLikeMe is a full-blown example of a community (ALS / Lou Gehrig's disease) where patients are tired of waiting for the medical industry to produce results. They're uploading their data (anonymized), sharing it, looking for patterns, even creating their own clinical trials.
The third aspect, ultimately the deciding one, is something I see all the time in my day job, where we study new software tools: the power of "mash-ups." That's the ability to slap together two pieces of software (or data) that were created without knowing that the other one exists, and making something new out of them without anyone planning it in advance. Things can just grow in any direction people want.
Mash-ups are a big part of what makes the Web what it is today: Anyone can put a Yahoo Map on their web site, I can take someone's YouTube video and put it on my blog, etc.

The power happens because this lets people create software gadgets without knowing how they'll be used, it lets people build tools that use data without knowing where the data will come from, and it lets people build big new systems just by assembling them out of "software Legos."

And in healthcare, that's what free public tools like Google Health and Microsoft HealthVault enable. Here's the personal example that hit me recently and tipped me:

When I was discharged from the hospital after my first week of Interleukin, I was given a complex medication schedule grid – which had to be created with pencil and ruler by a highly trained nurse.

This was not a sensible use of her time. So, being a software thinker, I spec'd out a "Med Minder" program that would take prescription instructions ("take this one 3x/day, take this one with meals," etc) and spit out a nicely printed daily schedule. I had additional ideas: "mash it up" with a database of pill images so you can see what pills to take; "mash it up" with a database of different Walgreen's pillboxes so you can see what to put in each cell of your particular pillbox.

I talked to a few people about it and hadn't found anyone interested in the idea.

But at the Google Health booth at a recent trade show, look what I saw: ePillBox.info. It takes your prescription info from Google Health and tells you how to fill your pillbox.

It was an epiphany: put my data in there, and I get access to mash-ups. All kinds of potential tools that I know could be useful become possible. The healthcare establishment isn't getting around to doing them, but ordinary data geeks are.

So here's how it boils down:

My goal is to help create a new world where healthcare is enormously more efficient than it is today, and where important new developments happen enormously faster than they do today.
And with that in mind, the advantages of uploading our data far outweigh the risks.

So I'm in.

Feeling grief means being alive

2009-02-20T13:54:00.003-05:00

A potent, poignant post today on the PsychCentral blog.

Feeling Grief Means Being Alive: 7 Tips to Help

If you've ever experienced grief over a loss, be ready to recall some emotions when you read this.

In my own cancer adventure, especially at the beginning, I had to experience grief: the anticipated loss of everything I knew, the prospect of saying good-bye to everything and everyone I know, saying good-bye to my entire future. Today, that confrontation has left me more alive than ever: I know each day is a reprieve from that loss.

My time will come someday, as will yours. Tomorrow is the memorial service for a former co-worker in Minnesota; in December a high school classmate took her own life; yesterday a current co-worker's mother finally passed on.

Grief is our lot: it's part of the human condition, as social beings who care. And having been there, I have a strong sense that ability to feel those feelings cleanly and clearly is good for our health.

Speaking of experiencing feelings, I recently started a little "hobby blog" that's serializing my cancer journal from two years ago. Every post that I made on my CaringBridge journal is set to reappear, two years later, to the minute. Here's that new blog: Laugh, Sing and Eat Like a Pig. The current post, from 2/19/07, is about a related topic: a few weeks after my diagnosis, I realized that how I viewed my tumors could make a difference, and I shifted my perception, to be more accepting of everything. Who knows how much that affected my outcome.

Having said all that, I'll also say that the work we do to improve healthcare has as one of its objectives the prevention of premature grief.

And all that adds up to this advice: while alive, be very, very alive. Just enjoy the heck out of this day and every day – and every glorious person who crosses your path.