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Month: June 2013

A Case for Open Data

A couple of weeks ago, President Obama launched a new open data policy (pdf) for the federal government. Declaring that, “…information is a valuable asset that is multiplied when it is shared,” the Administration’s new policy empowers federal agencies to promote an environment in which shareable data are maximally and responsibly accessible. The policy supports broad access to government data in order to promote entrepreneurship, innovation, and scientific discovery.

If the White House needed an example of the power of data sharing, it could point to the Psychiatric Genomics Consortium (PGC). The PGC began in 2007 and now boasts 123,000 samples from people with a diagnosis of schizophrenia, bipolar disorder, ADHD, or autism and 80,000 controls collected by over 300 scientists from 80 institutions in 20 countries. This consortium is the largest collaboration in the history of psychiatry.

More important than the size of this mega-consortium is its success. There are perhaps three million common variants in the human genome. Amidst so much variation, it takes a large sample to find a statistically significant genetic signal associated with disease. Showing a kind of “selfish altruism,” scientists began to realize that by pooling data, combining computing efforts, and sharing ideas, they could detect the signals that had been obscured because of lack of statistical power. In 2011, with 9,000 cases, the PGC was able to identify 5 genetic variants associated with schizophrenia. In 2012, with 14,000 cases, they discovered 22 significant genetic variants. Today, with over 30,000 cases, over 100 genetic variants are significant. None of these alone are likely to be genetic causes for schizophrenia, but they define the architecture of risk and collectively could be useful for identifying the biological pathways that contribute to the illness.

We are seeing a similar culture change in neuroimaging. The Human Connectome Project is scanning 1,200 healthy volunteers with state of the art technology to define variation in the brain’s wiring. The imaging data, cognitive data, and de-identified demographic data on each volunteer are available, along with a workbench of web-based analytical tools, so that qualified researchers can obtain access and interrogate one of the largest imaging data sets anywhere. How exciting to think that a curious scientist with a good question can now explore a treasure trove of human brain imaging data—and possibly uncover an important aspect of brain organization—without ever doing a scan.

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Are Employers to Blame For Our High Medical Prices?

In a recent New York Times blog, Uwe Reinhardt places much of the blame for high and rising medical prices on passive employers. He argues that employers should work just as hard to reduce healthcare benefit costs as they work to reduce other input costs. But he then observes:

“One reason for the employers’ passivity in paying health care bills may be that they know, or should know, that the fringe benefits they purchase for their employees ultimately come out of the employees’ total pay package. In a sense, employers behave like pickpockets who take from their employees’ wallets and with the money lifted purchase goodies for their employees.”

I think that Reinhardt gets the economics wrong here and, in the process, he puts too much of the blame on employers. Reinhardt is right in one respect – employees care about their entire wage/benefit packages. If benefits deteriorate, employers will have to increase wages to retain workers. Thus, it seems that if an employer reduces benefit costs, it must increase wages by an equal amount. If that is true, we can understand why employers are passive.

The correct economic argument is a bit more nuanced. Employees do not care about the cost of their benefits; they care about the benefits. If an employer can procure the same benefits at a lower cost, the employer need not increase wages one iota. In this regard, there is nothing special about health benefits. Suppose an employer offers employees the use of company cars. Workers don’t care what the employer paid for the cars, and if the employer can purchase cars at a deep discount, it will pocket the savings.

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Targeting Obesity With Health Care Reform

The Medicare Board of Trustees just released its latest report on the program’s finances and the results are terrifying. Despite a decline in health care costs, the Medicare Trust Fund will be bankrupt in 2026.

For the program to survive for future generations, innovation will be essential. The old medical paradigm of diagnosing and treating diseases must give way to a more holistic approach aimed at eliminating risk factors that lead to disease. The best place to start is by addressing the growing problem of adult obesity.

In the past 30 years, the percentage of American adults who are obese has doubled, driving a sharp rise in such chronic conditions as diabetes, heart disease and hypertension.

The ramifications for health spending are significant. Annual health costs for obese individuals are more than $2,700 higher than for non-obese people. That adds up to about $190 billion every year. And many of these costs are borne by Medicare, which will spend a half-trillion dollars over the next decade on preventable hospital readmissions alone.

We cannot afford to wait until patients are on Medicare to fight obesity. Rather, we need to encourage weight control over the course of patients’ lives.

Fortunately, we now have an ideal opportunity to implement reforms. The new health insurance exchanges created under the Affordable Care Act can establish effective care coordination strategies to identify and treat chronic conditions earlier, addressing not just the immediate conditions but the underlying ones as well. Obesity is one of the most common. Medicare, in turn, can adopt these strategies, and the benefits for both patients and taxpayers will be substantial. Continue reading…

Online Won’t Ever Replace Face-to-Face. Or Will It?

The simple explanation is a proverb that has been stated in similar ways in various cultures for more than 2,000 years: “The eyes are the window to the soul.”

Not, mind you, “Windows® is the eye to the soul.”

Trust me, I appreciate computer technology and am ever-grateful for the benefits it has yielded me personally and to the patient group I represent, Spontaneous Coronary Artery Dissection (SCAD). Without a computer, search engine, and online community, I never would have met another SCAD survivor, and Mayo Clinic definitely would not be in the weeds of a virtual registry of SCAD survivors, plus a DNA biobank of patients and families from around the globe, at this very moment.

I grew up in locales where catching crabs with a chicken neck on a string and casting a net for shrimp were common practices, and in each, patience is the operative word. If you look at the case of patient-initiated research into SCAD (or any other rarely diagnosed condition), you see a progression that requires patience. The process begins vast – much like seining – and ends personal. For me, what began on AOL.com as my Internet search for any and all references to “heart dissection,” was turbocharged by Google and its evolution. (I remember worrying about what would happen to my computer if I tried this “thing” everyone was talking about. It seemed daring enough to be on AOL instead of mindspring!) But Google led me to an organization, WomenHeart: The National Coalition for Women with Heart Disease, and the online community it runs in partnership with Inspire, the Inspire/WomenHeart Support Community.

And there, on www.inspire.com/groups/womenheart is where our little incubator of SCAD patients formed. Very slowly at first, but thanks to Google’s search and display features, the pace picked up over time and we grew into the hundreds. Then, Facebook was launched, providing a seemingly more personalized venue to interact. Next Twitter, which (although ultra concise at 140 characters per tweet) is an easy way to connect with likeminded souls, similar to that instant bond when walking down the street and sharing “Great game, huh?”

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How My Parents’ Death Changed My Thinking About End-Of-Life Care

My sister and I took our positions in the funeral home’s family room and greeted hundreds of mourners who had come to pay their respects. Everything seemed as it had four months earlier at our mother’s funeral. The ubiquitous tissue boxes. My navy pinstriped suit. The ripped black ribbon, a Jewish tradition, affixed to my lapel.

But this time, we were accepting condolences after the death of our dad, who stood next to us such a short time before.

It’s hard enough to lose one parent. Losing two within months is incomprehensible. When I left my parents’ Michigan apartment last month, I couldn’t believe it would be for the last time. I’ve replayed phone messages so that I could hear their voices again. And each morning, I look at Dad’s watch on my wrist, thinking it should be on his.

Two days before my dad died, I celebrated the first Mother’s Day without my mom. Now, I’m marking the first Father’s Day without my dad.

As I’ve mourned my parents, I’ve been struck by how many stories I’ve heard about husbands and wives dying soon after their spouses. One of my high school teachers lost both parents within a year; so did a journalist friend in Los Angeles. My rabbi told me his parents died only months apart.

My mom buried both of her parents within the same week in April 1979, when I was 5. My zaydee died first, unable to fathom life without his wife, who lay dying in the hospital. My bubbe died during his funeral two days later.

I wondered whether there was more to this than coincidence, and sure enough, there’s a well-documented “widowhood effect.” Those who lose a spouse are about 40 percent more likely to die within six months than those with living spouses. The effect has been found in a host of countries, across a range of ages, in widows and in widowers – though men are more likely to die soon after losing spouses than women are.

S.V. Subramanian, a professor of population health and geography at Harvard University, co-wrote a review published in 2011 that looked at more than a dozen studies on the effect. “We never say that grief is a disease,” he told me. “But what some of this research is showing is that at older ages, grief can make you more vulnerable to mortality.”

Subramanian said his uncle’s parents died within days of one another.

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Chapter Nine: In Which Dr. Watson Discovers Med School Is Slightly Tougher Than He Had Been Led to Believe

One of the computer applications that has received the most attention in healthcare is Watson, the IBM system that achieved fame by beating humans at the television game show, Jeopardy!. Sometimes it seems there is such hype around Watson that people do not realize what the system actually does. Watson is a type of computer application known as a “question-answering system.” It works similarly to a search engine, but instead of retrieving “documents” (e.g., articles, Web pages, images, etc.), it outputs “answers” (or at least short snippets of text that are likely to contain answers to questions posed to it).

As one who has done research in information retrieval (IR, also sometimes called “search”) for over two decades, I am interested in how Watson works and how well it performs on the tasks for which it is used. As someone also interested in IR applied to health and biomedicine, I am even more curious about its healthcare applications. Since winning at Jeopardy!, Watson has “graduated medical school” and “started its medical career”. The latter reference touts Watson as an alternative to the “meaningful use” program providing incentives for electronic health record (EHR) adoption, but I see Watson as a very different application, and one potentially benefitting from the growing quantity of clinical data, especially the standards-based data we will hopefully see in Stage 2 of the program. (I also have skepticism for some of these proposed uses of Watson, such as its “crunching” through EHR data to “learn” medicine. Those advocating Watson performing this task need to understand the limits to observational studies in medicine.)

One concern I have had about Watson is that the publicity around it has been mostly news articles and press releases. As an evidence-based informatician, I would like to see more scientific analysis, i.e., what does Watson do to improve healthcare and how successful is it at doing so? I was therefore pleased to come across a journal article evaluating Watson [1]. In this first evaluation in the medical domain, Watson was trained using several resources from internal medicine, such as ACP MedicinePIERMerck Manual, and MKSAP. Watson was applied, and further trained with 5000 questions, in Doctor’s Dilemma, a competition somewhat like Jeopardy! that is run by American College of Physicians and in which medical trainees participate each year. A sample question from the paper is, Familial adenomatous polyposis is caused by mutations of this gene, with the answer being, APC Gene. (Googling the text of the question gives the correct answer at the top of its ranking to this and the two other sample questions provided in the paper).

Watson was evaluated on an additional 188 unseen questions [1]. The primary outcome measure was recall (number of correct answers) at 10 results shown, and performance varied from 0.49 for the baseline system to 0.77 for the fully adapted and trained system. In other words, looking at the top ten answers for these 188 questions, 77% of those Watson provided were correct.

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What the Khan Academy Teaches Us About What Medical Education Will Look Like Ten Years From Now

From SFO, I carefully followed my Droid Navigator’s directions off Highway 101 into a warren of non-descript low-slung office buildings—non-descript except for the telltale proliferation of Google signs and young adults riding colorful Google bikes.  I drove around to the back of several of those complexes and finally found the correct numbered grouping.  It really could have been any office or doctors’ office complex in the U.S.  The Khan suite is on the second floor.  There’s a simple brass plate saying “Khan Academy” on what looked like oak double doors. I let myself in and immediately encountered a large, central open space—with long dining tables, food, an ample sitting area with couches conducive for group discussions—and a friendly greeting by programmers and staff.  Oh, and computers—there were lots of computers.  As far as I could tell, nobody had their own office—though maybe Sal does.  Everyone was also open, friendly and passionate about the great work happening there.

After some trial and error, Rishi and I found an unused office and huddled around his Mac for a Google Hangout interview with a Bay Area reporter about the Khan/RWJF health care education project.  Later, I met with Shantanu, the Khan COO and former “math jock” high school friend of Sal, as well as Charlotte, external relations, and Matt, software engineer. They’re all long termers at Khan—that means they’ve been there for about two years.  Overall, the energy was pretty electric.  One other small thing—do not be fooled—these incredible people are, how should I put it—ferociously—intense and focused.

Pioneers in flipping the med school classroom

The next morning, Rishi and I met at Stanford Medical School—in the Li Ka Shing Center for Learning and Knowledge—an enormous and beautiful building off Campus Drive near the hospital that did not exist back in my days as an earnest Stanford law student.   We were there to observe some pioneers in medical education attempt to use Khan-like videos to flip the medical school classroom.  This work at Stanford is part of the current Khan Academy and RWJF collaboration. We’re trying to understand what happens when a medical school attempts to use the Khan-style videos to change the classroom interaction.

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#Dataviz + #Design + #Diabetes: The Beginning

I love interactive data visualization (#dataviz).  It is one of the things that I definitely wanted to explore when I came out to the Bay Area on sabbatical, because I believe that it has great potential for helping both patients and clinicians with diabetes management.  The sheer volume of numbers available for this disease is overwhelming; we need #dataviz tools that can help us achieve greater understanding and make actionable clinical decisions to improve health.

This is what we usually see in clinic: numbers written down on a piece of paper.

Yes there are computer systems that link to blood glucose meters, but there are a number of complexities with the downloading of blood sugar numbers in clinic (which deserves an entire blog post sometime in the future).

You can see there is some visual analysis and annotation that we do perform, albeit primitive.  The circles represent high blood sugars (>150 mg/dl)and the triangles represent low blood sugars (<70 mg/dl). This is almost better than the cave painters don’t you think?

But even the minority of patients who download their BS to the computer, are viewing dashboards like this.

Pie charts, need I say more? I can extract some useful insights from these charts, which improve over the previous one I showed, but a few things strike me: (1) some of the scatter plots overlay weeks of data, which I don’t find helpful because you can’t tell how BS on a given day are responding and relate them to life events; (2) some visualizations show a lot of numbers in many of the sections, and it just becomes onerous to go through them and find trends; (3) many provide statistics (area under the curve, MAD%) which I think only a minority of families and children really understand; (4) although some of the software programs do provide interactivity and let you see the data at different time scales (day, week, month), if you change to a different view, you are stuck trying to remember in your head what you saw on a previous screen because you can’t see the multiple levels at once; (4) finally, I find that the user interface and design could use major improvement.

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Defense Probably Goes Commercial, Not Necessarily Proprietary

Secretary of Defense Chuck Hagel’s long-awaited (in health IT circles, anyway) decision on the Department of Defense’s core health IT system has been made. The VA’s VistA system is out as the preferred DoD. Unless it’s not.

I’ll explain.

In his May 21 memo, Hagel directed the DoD to initiate a competitive process for a commercially available electronic health record (EHR) solution.  Understandably, the secretary has to create a level playing field, a competitive process, so he can tell Congress with certainty that due diligence was done. Hate it a lot or hate it a little, this is the nature of our political process.

Already, many are spinning Hagel’s decision as a huge win for proprietary solutions; popular blogger Mr. HIStalk has already established Epic as the frontrunner in the upcoming DoD derby.

But before we simply anoint Judy Faulkner the queen of American health IT, I want, as the Brits say, to throw a spanner in the works.

Commercial ≠ Proprietary

A careful review of the Hagel memo and other recent statements from his top lieutenants reveal a more progressive vision and clear requirements for an open architecture and service model.

From the Hagel memo:

I am convinced that a competitive process is the optimal way to ensure we select the best value solution for DoD … A competitive process will allow DoD to consider commercial alternatives that may offer reduced cost, reduced schedule and technical risk, and access to increased current capability and future growth in capability by leveraging ongoing advances in the commercial marketplace … Also, based on DoD’s market research, a VistA-based solution will likely be part of one or more competitive offerings that DoD receives.

To sum up, the secretary has directed the DoD to go commercial instead of developing and maintaining their own VistA-based solution, but commercialized VistA-based solutions will be included in the competitive process.

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Guahao: VC Fantasy. Online Appointment Registration System for China’s 700 Million Internet Users


The promising platform is called Guahao (挂号网) and it claims to be China’s largest online appointment registration system.  With a national network of nearly 4,000 hospitals, 600 being Level-3 hospitals, and over 300,000 specialists, it is hard to dispute it’s size.*  Guahao began development in Shanghai 2010 in collaboration with the Chinese Health Education Network, Fudan Hospital and Healthcare Management Co., and the Chinese Hospital Association, and later expanded nationally.  Guahao attempts to alleviate the bitterness patients endure during a typical hospital visit.

*It should be known that there are actually several online appointment registration systems in China; However, most are small, regionally splintered and have questionable legitimacy.  Guahao is by far the largest and most well supported system in China.

China historically has not had a call-ahead appointment scheduling system.  Patients throughout China have long lamented the country’s hospital queuing system, or the lack thereof.  Patients arrive at the hospital, literally take a number, and wait for their turn – sometimes for over 24 hours.  It is not uncommon to see throngs of patients and their family members outside of the hospital, camping out in makeshift beds to see a physician.  A lack of appointment system puts pressure on the hospital’s health workers.  Patient scheduling provides predictability of patient flow and allows for more efficient allocation of healthcare resources.  Not to mention it makes for a much more patient-centered approach to healthcare delivery.

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