What it's all about

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.

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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!!!

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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

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:

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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:

1. Have the right to our own health data
   
   
2. Have the right to know the source of each health data element
   
   
3. 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
   
   
4. 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.

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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"

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.

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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"

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.

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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

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!