On Health Records, I'll Take Microsoft Over Aetna

I've written about electronic health records here and elsewhere, so it's been fascinating to me watching the health industry lurch its way towards an EHR future. While I've endorsed WorldVista - an open-source EHR based on the VA's EHR system - I'm really platform agnostic, so long as a) there's a premise of openness, so that the records are portable for the patient and the data useful (albeit anonymized as neccesary) for researchers and b) the industry stop talking about it and start loading it. So the arrival of Microsoft HealthVault is, to my mind, a welcome kick in the pants for every hospital administrator and HMO CTO - the realization that this is not an optional future; if the health care industry just keeps sitting around, the market will create its own solutions and innovation will happen. The notion that Google, too, is out there with a looming Health product (whatever form it may take), is probably even greater catalyst for change.

I was curious, then, to read on the WSJ Health Blog today that the CEO of Aetna dismissed the Microsoft and Google efforts as "vaporware." The full quote from Aetna's Ronald Williams: "“We’re perplexed by the fact that their vaporware gets all this attention and we get very little.”

Aetna, you see, has its own product, called CareEngine and a press release describes it as "a patented clinical decision support technology". (Sounds like just the sort of thing Grandma's been asking for!) Evidently a patient can add their own information to it, and all care billed to Aetna gets fed into the record as well.

I myself am an Aetna customer twice over, and I had no idea they had a patient-centric records offering (turns out it's only available currently to 800,000 of 16 million customers). At first I thought it'd be great to get Aetna's product to try - and I will try to do so, both as a customer and as a journalist. But on second thought, I realize they have a hefty challenge ahead if they're going to convince me that Aetna's product is better than something Microsoft or Google or even WorldVista may come up with. Here's why:

1) I don't trust Aetna. I don't mean that I don't trust them with my health infomation. I have no doubt they'll bend over backwards to triply encrypt everything to ensure my privacy (and cripple all sorts of intriguing uses of my data in the process). No, I don't trust Aetna's product to act in my best interest. The one advantage the Journal specifies is that "all of your health care that gets billed to Aetna automatically loaded into the system." I guess that's useful - I won't have to load anything into the system manually. But the mention of billing makes me wary; really, I suspect Aetna's product is made for Aetna first, and for me second. That means convenience and cost-savings on their end - but what's it mean for me? They may be the "fourth or fifth largest software development company in the country” (a claim I seriously doubt), but are all of those engineers trying to find ways for the records system to work for me or to work for Aetna? The benefit of Google (maybe) and Microsoft (now) is that they're trying to please me, not Aetna's shareholders.

2) Their system is proprietary. Dollars to donuts that Aetna's records aren't portable if I leave Aetna - and even if they are, that the software it's built on is closed and locked down to outside developers or possible partners. Why's that matter? Because if it's an open system, 16 million customers may find ways to improve it; if it's really the fourth or fifth biggest software development project in the country, then I bet there's more than a few programmers who may have some nifty and novel improvements for it. But my bet is that such openness is impossible with Aetna's system, where I know WorldVista and I bet Google have some component of encouraging innovation in the platform.

Moreover, what happens to the data? How might Aetna use my data (anonymized, etc) and bundle it with other patients and use that for research - not just their own research for how they can save money, but real, ambitious scientific research of the sort Isaac Kohane et al dream of? Moreover, will Aetna allow their data to be combined with, say, Kaiser's, or WorldVista's to create a uber-database that could drive public health and medical research ever faster? I'm skeptical.

3) I love this last quote from Williams about Google and Microsoft: "Most of them in my experience have very little experience with the system.” Yes, and bless them for it. The "system", such as it is, is a total mess and hardly something you want to work within. This smacks of Politburo rhetoric; if you don't know the Machine, you'll never get anything accomplished. That sort of health industry centric perspective is just the thing that has kept EHRs on the shelf, and it's the stuff that we desperately need to move away from.

To Williams and Aetna, I say: please, prove me wrong. I would love to post that I had you guys totally mistaken. And to Microsoft today (and Google someday?), I say: What took you so long?

UPDATE: a very thorough drill-down into Microsoft's product at VentureBeat here and here.

Beating Cancer Without Drugs

So oftentimes people use the phrases "personalized medicine" and "pharmacogenomics" interchangably, in the sense that "real" personalized medicine means finding out about your risks and predispositions early, then taking treatments personalized to your genetic profile. But that's only one aspect of how things might play out. Before turning to drugs, it's likely physicians will recommend lifestyle changes - exercise, diet, etc - to ward off possible risks. The question is: Do such behavior modifications actually work? And do they take?

New research from Cancer Research UK indicates that the answer to the first question - do they work - is likely yes. Relatively simple behavior changes could eliminate 10 percent of future breast cancer cases in the UK. The main changes: reduce the use of hormone replacement therapy, increased exercise, and reduced alcohol consumption. It's not clear from the BBC story just what sort of research this is based on, but it's clearly a forward looking projection. So what about the other issue - do they take? That's still an open question.

Personalized Medicine That Doesn't Work

The promise of personalized medicine - pharmacogenomics to predictive testing - is that when you tailor medicine to the individual, you have a much better chance of effective treatment. But there's an assumption built into that model: The "medicine" you deliver has to be legitimately effective. That's the lesson of this British study that looked into tailored treatments. The problem: these were herbal medicines, not pharmaceuticals. The catch is that the research was basically a meta-analysis, based on previous clinical trials of herbal medicines. There were only three such trials available, however, so the conclusion that trials of these particular medicines turned up no real positive effects isn't quite the same as saying that all herbal medicines are bunk.

The premise of traditional Chinese medicine is that each treatment is tailored to the individual, a combination of various herbs by a practicioner. It sounds like a far cry from the sort of personalized treatments that genomics might offer. But it's also a warning that simply saying things are "personalized" or "tailored to the individual" doesn't mean that they'll in practice be any more effective.

Take Two Wallgreens Every Six Hours

Just saw this research from a few weeks back that claims the biggest thing on prescription bottles is the store's logo, not any useful piece of information. Makes sense, I suppose - they're the ones selling it. But it reminded me of one of my favorite design stories of the past couple years, the innovative prescription bottle created by Target (shown above).

What's so innovative about it? " The designer thought great improvements could be made by reformatting label layout with clarity and a logical sequence of information as primary criteria," according to a packing industry publication. Crazy, that - a label designed so that the patient can understand the information, rather than use it as a billboard. Crazy Minnesotans...

USC 1, Staph Infections 0

I've written here before about MRSA, aka antibiotic resistant staph. So makes sense to link to this curious story from the LA Times about the USC football team taking on staph infections and winning. Seems the squad suffered through up to 19 cases of staph infections in 2002 and 2003, resulting in two hospitalizations (and they got away easy). So the team stopped sharing towels (eww) and started using alcohol-based hand sanitizers. It worked; no more cases since 2004.  (via WSJ Health Blog)

Is Pharmacogenomics For Real?

So maybe the crowd (such as it is) can help me with this one. I've been racking my brain and scouring Google to come up with some good examples - hell, any examples - of pharmacogenomics in practice, right now. I mean, this is the supposed Holy Grail of personalized medicine - that drugs will be tailored to our genomes - and there has been a good 20 years research. But I can only find two examples: Herceptin, which is used in breast cancer patients whose cancer is caused by excessive protein from the HER2 gene; and warfarin, a blood-thinning drug used for patients recovering from heart attack or major surgery - there's now a screening test for those with certain gene that causes excess bleeding, raising the possibility of serious side effects (stroke, etc). But really, that's it? I mean it's 2007, and this is the big payoff of personalized medicine, which we've been hearing about for a decade - two lousy drugs?

Tell me if I'm wrong (I sure hope I am...)

What Causes Heart Disease? No One Knows

OK, that headline is an exaggeration, but one of the most stunning statistics I've gleaned in the past couple years is that when you put together all the known causes of coronary artery disease - high cholesterol, stress, high blood pressure - you account for something like half of all cases. That's it. In other words, for fully half of all cases of heart disease, we have no idea what the cause is (this comes from UC Berkeley's Len Syme; I'm trying to track down the specific stat he used. If you know, please tell me).

That means that despite all the research that's been done on heart disease, and all the money spent on that research, there's still a massive black unknown spot. On a population level, this means that half of the people who are going to get heart disease have no way of ever knowing it, ever guarding against it, because they simply don't match up with any of the known causes. For a disease that ranks as the number one killer in the US, that's a rather frightening illustration of our still-limited medical knowledge.

The easy assumption, of course, is that there's a massive genetic component at work that simply hasn't yet been discovered. That's what I figured, and many others have as well. But today I read a report about a meta-analysis done in the UK that shows that at least one likely gene - APO E2- may in fact have very little to do with heart disease (the study was published in JAMA last week). One genetic variant did have some associated reduction in risk (20%), but it was a much smaller effect than anticipated, according to the study authors.

This is especially disappointing because there has been some movement towards using screening for APO as a risk factor for heart disease. APO E2 is too rare a mutation to be a worthwhile screen, the authors say (APO E4 is a marker for Alzheimer's Disease).

So where's that leave heart disease? That massive black spot of unknown is still there.

The Power of Negative Thinking: Freeing the Dark Data of Science

The new issue of Wired has an essay I wrote on a topic I've been mulling for a few months: liberating what I call "dark data" in science, the unpublished, inconclusive, or inconvenient results that too many researchers would rather stick in a drawer than put into the light so that others may learn from their work (and perhaps build on it). Here's the gist:

In this data-intensive age, the apparent dead ends could be more important than the breakthroughs. After all, some of today's most compelling research efforts aren't one-off studies that eke out statistically significant results, they're meta-studies — studies of studies — that crunch data from dozens of sources, producing results that are much more likely to be true. What's more, your dead end may be another scientist's missing link, the elusive chunk of data they needed. Freeing up dark data could represent one of the biggest boons to research in decades, fueling advances in genetics, neuroscience, and biotech.

The essay mentions one cool project by Google they're calling (internally) the Palimpsest project, where they offer to store and distribute massive data sets - like in the petabytes - from scientists.

I've been mulling over this "free negative results" theme for a couple years, but this summer I had two seperate conversations with Pat Brown and Michael Eisen, two of the three founders of PLoS. Both of them grokked the idea immediately - turns out it's the impulse that led to the creation of PLoS ('open access' being just one step along the way. But since the more ambitious, less practical notion of freeing all dark data hasn't really been stated as an explicit call to arms, I figured I may as well try to give it a shot.

Can DNA Break the Asbestos Backlog?

One of the most egregious injuries to public health of the 20th century - one that could've largely been avoided - was the widespread use of asbestos in industry, manufacturing, and construction. Though a great insulator and flame-retardant, the microscopic asbestos fibers also wreak havoc when inhaled - causing all sorts of lung complications, the worst being "mesothelioma", the cancer caused by asbestos exposure. Even after the first cases of "asbestos lung" became well known (the first court case was in 1929), it was still kept in widespread use.

Though most products were removed from the market by the 1980s, a stunning swath of the population had had some exposure, a legacy that keeps on ticking, with some 10,000 people still dying from the legacy of asbestos exposure annually. It has likewise spread into the legal system. In the past three decades, $70 billion has been spent on asbestos litigation (Jim Suroweicki had a nifty New Yorker column on the asbestos industry last year, from which some of these facts are drawn). Asbestos claims clog our court systems - there have been more than 6,000 defendants and 600,000 claimants; in 2001 Supreme Court justice David Souter described asbestos litigation as "an elephantine mass" (the onslaught has resulted, not surprisingly, in all sorts of lobby groups and organizations aiming to eliminate the backlog. Another curious side effect: Google charges top dollar for ads to run alongside searches for "asbestos litigation" and similar terms because there's such demand from lawyers). The cases are hard fought, and drag on for weeks. Last time I was called for jury duty I was considered for a civil case based on asbestos litigation; the judge estimated that it would take three to six weeks to hear all the arguments.

One of the reasons asbestos litigation is such a burden on the court system is that it's difficult to prove causality for many cases. Though some conditions, such as mesothelioma, are strongly correlated with asbestos exposure, many claimants are bringing lawsuits based on less egregious illnesses and short-term exposures. In the case I almost sat on the jury for, the claim was for emphezema - and the plaintiff's lawyer slyly asked potential jurors if the fact that the plaintiff was a lifelong smoker, as well as someone exposed to asbestos, would affect our ability to judge the origin of his disease. Multiply that times 10,000 and you have a huge, sclerotic burden on the court system, and the country.

There have been efforts at cleaning up the mess with legislation. The "Fairness in Asbestos Injury Resolution Act" would set up at $140 billion trust fund for asbestos claimants, but it hasn't gotten out of Congress (the American Public Health Association, among others, opposes the bill).

And now there may be a solution through technology. A DNA test called msds1 promises to offer a clear, declarative read on causality for injuries from exposure to chemicals and substances such as asbestos. If it catches on, it could be a great impetus towards answering the causality question in so many asbestos suits (and it could give it's inventors a nice slice of the massive litigation expenditures).

The test, devised by University of Illinois Bruce Gillis at his Cytokine Institute, measures gene expression, matching a gene up to specific chemical signatures across 36,000 parameters. The company claims it can provide "99.9% certainty if a person was injuriously exposed to a particular toxin." It's hard to suss out exactly how the test works, but it sounds like it works by comparing tissue from a diseased person claiming causal exposure to tissue from a healthy person. More specifically, someone claiming injury provides a tissue sample - and then that A sample is compared to a B sample from a healthy person that has been exposed to specific chemicals. If there's a DNA match in gene expression, odds are the DNA change is due to the substance in question, and the injury claim is valid. The test costs a little over $6,000, according to a National Underwriter story.

Earlier this month, the Los Angeles-base Institute opened an office in Boston - a hub for asbestos related litigation. The test has already been used in 20 California cases, and I expect it'll start showing up in East Coast courtrooms now, too.

(Curiously, the UK press is all over this - The Times of London, the Independent, and the BBC all have stories. Some publicist must've been working the field over there).

Brits Would Sooner Die Than Exercise

I love this story: a survey says that even the threat of death won't get a majority of Britons to exercise and maintain their health. Just "38% of people questioned by YouGov said they would do more exercise if their life depended on it," according to the BBC story. Says Mike Knapton, director of prevention and care at the British Heart Foundation: "For many people, exercise has become an ugly word, something to avoid at all costs." Wow. And people call Americans lazy. Reminds me of Idiocracy, the 1/3 great movie by Mike Judge that, tragically, nobody saw.