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John Irvine

Who Gets Autism?

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By NEUROSKEPTIC

The paper is from Leonard et al and it’s published in PLoS ONE, so it’s open access if you want to take a peek. The authors used a database system in the state of Western Australia which allowed them to find out what happened to all of the babies born between 1984 and 1999 who were still alive as of 2005. There were 400,000 of them.

The records included information on children diagnosed with either an autism spectrum disorder (ASD), intellectual disability aka mental retardation (ID), or both. They decided to only look at singleton births i.e. not twins or triplets.

In total, 1,179 of the kids had a diagnosis of ASD. That’s 0.3% or about 1 in 350, much lower than more recent estimates, but these more recent studies used very different methods. Just over 60% of these also had ID, which corresponds well to previous estimates.

There were about 4,500 cases of ID without ASD in the sample, a rate of just over 1%; the great majority of these (90%) had mild-to-moderate ID. They excluded an additional 800 kids with ID associated with a “known biomedical condition” like Down’s Syndrome.

So what did they find? Well, a whole bunch, and it’s all interesting. Bullet point time.

  • Between 1984 to 1999, rates of ID without ASD fell and rates of ASD rose, although there was a curious sudden fall in the rates of ASD without ID just before the end of the study. In 1984, “mild-moderate ID” without autism was by far the most common diagnosis, with 10 times the rate of anything else. By 1999, it was exactly level with ASD+ID, and ASD without ID was close behind. Here’s the graph; note the logarithmic scale:

Continue reading…

The Cusp of Consumer Engagement

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By JOHN MOORE

When Chilmark Research was founded, the primary area of focus was healthcare IT that was consumer facing, consumer enabling – tools that would help consumers better manage their health and the health of loved ones. This led to our first major study on Personal Health Records (PHRs) published in May 2008. But alas, I was idealistic in the belief that there was enough interest in this area, enough of a market to sustain and grow this young company. Sure, there are loads of small companies trying to make a consumer health play and there is certainly plenty of hype surrounding it but at the end of the day when one takes a close look at this market one finds a multitude of small companies struggling to break through. Exceedingly few companies have been able to really capture the consumer market potential and scale to a size that would support the kinds of services that Chilmark Research offers. This led to a rethinking of what Chilmark Research would focus upon.

Stepping back and looking at the market one sees several critical technical gaps:

  1. Lack of Data: Despite all of the incredible medical advances taking place and the amazing technologies that are being used today to practice medicine, the industry as a whole is a laggard in adoption of IT. One can point the finger in many directions but the bottom line is that there is simply not a lot of clinical, personal health information (PHI) in a readily computable digital format that a consumer can tap into.
  2. Data Liquidity:  A consumer’s PHI, even when it is in digital form is most often scattered across a multitude of silo’d applications making it virtually impossible for a consumer to readily and securely access and manage their complete health records using the data contained therein to personally guide them to make better health decisions. There are a number of contributing factors at play here, primary among them lack of clear standards & terminology as well as reluctance of healthcare organizations to release data to the consumer.
  3. Ease of Access: Providing the consumer with “on-the-go” access to their health information allowing them to easily call up or input data to their personal health system, via a mobile device. Today, most mHealth apps in this category are rudimentary and it is not necessarily the fault of the app developer but often the lack of good data as a result of points 1 & 2.Continue reading…

The Health Insurance EHR

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By MARGALIT GUR-ARIE

Kaiser Health News recently published excerpts of an interview with the CEO of Aetna, Mark Bertolini. Interesting article and interesting subject, but one thing Mr. Bertolini said in connection with Aetna’s acquisition of Medicity, a vendor of Health Information Exchange (HIE) platforms, caught my attention: “We are as much a health information technology company as an insurer”. United Healthcare has also been engaged in significant HIT acquisitions for quite some time. They bought an EHR, Care Tracker, and an HIE vendor, Axolotl, amongst other things. According to the Aetna CEO, in order to create a system that functions properly, insurers “have to be able to provide an infrastructure”.  So is this the future? Will health insurance giants be providing insurance coverage to customers, and HIT infrastructure, including EHR software, to physicians and hospitals?

Most HIT experts are forecasting consolidation in the EHR market, which is currently fragmented into hundreds of less than optimal disparate software products, but is anybody seriously contemplating that the emerging forces in health care technology will be the payers? If you think about this for a moment, and if you remember doctors’ plight that EHRs mostly benefit payers, this outcome doesn’t seem so far-fetched. After all, selling health insurance and selling EHRs follows pretty much the same paradigm.Continue reading…

Does America Want Apple or Android for Health Care?

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BY DAVIS LIU, MD

The future direction of American health care is unclear.  Certainly the cost trend as it exists is unsustainable with health care costs being a major concern of the private sector, the government, and individuals.  How does the nation manage costs while ensuring high quality medical care, access, and service?  Proposals include increasing competition among insurers, providers, and hospitals to drive down prices or giving more financial responsibility to patients via higher deductibles and co-pays with the belief that they will demand price transparency, shop around for the best price, and as a result slow health care costs.

What if both ideas are wrong?

While it is possible these plans might work, I cannot help but notice the similarities in the challenges for patients in navigating the health care system and consumers figuring out how to purchase and use technology.  Walk into your neighborhood electronics store.   Individuals are overwhelmed with the number of product choices, manufacturers, differences in technical specifications and features.  In the majority of situations, consumers are unsure of what they are purchasing.  They want something that just works, whether surfing the internet, making home movies, or being connected with loved ones.  The gap in knowledge between an expert and a consumer is great and often unintentional and unapparent.

Within the technology world, there are two groups of thought.  The first group offers technology in a closed system, like Apple, where the focus has been on just making things work.  There are a limited number of product types and designs.  For example, its current smartphone, the iPhone 4 comes in only two types.  Aside from the base memory of 16 GB or 32 GB and two different prices, the phones are otherwise identical in features with the same apps, cameras, and ability to record video.  Although the specifications are available for anyone to see, the focus is rarely on the technical elements of the products themselves and more on what they can do for you.  Walk into any Apple retail store and the products are situated by function.   Staff ask not how much computing horsepower, storage space, or CPU speed one needs, but what one plans on using the smartphone or computer for.Continue reading…

THCB Live: Microsoft

A few weeks back at HIMSS Matthew Holt caught up with Microsoft Health Solutions’ Sean Nolan (Chief Architect) and Nate McLemore (VP, Business Development) to chat about the technology and business of NHIN Direct, HealthVault and much more.

The Tufnel Effect

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By PSYCH GRIPE

In This Is Spin̈al Tap, British heavy metal god Nigel Tufnel says, in reference to one of his band’s less successful creations:

“It’s such a fine line between stupid and…uh, clever.”

This is all too true when it comes to science. You can design a breathtakingly clever experiment, using state of the art methods to address a really interesting and important question. And then at the end you realize that you forgot to type one word when writing the 1,000 lines of software code that runs this whole thing, and as a result, the whole thing’s a bust.

It happens all too often. It has happened to me, let me think, three times in my scientific career and, I know of several colleagues who had similar problems and I’m currently struggling to deal with the consequences of someone else’s stupid mistake.

Here’s my cautionary tale. I once ran an experiment involving giving people a drug or placebo and when I crunched the numbers I found, or thought I’d found, a really interesting effect which was consistent with a lot of previous work giving this drug to animals. How cool is that?

So I set about writing it up and told my supervisor and all my colleagues. Awesome.

About two or three months later, for some reason I decided to reopen the data file, which was in Microsoft Excel, to look something up. I happened to notice something rather odd – one of the experimental subjects, who I remembered by name, was listed with a date-of-birth which seemed wrong: they weren’t nearly that old.

Slightly confused – but not worried yet – I looked at all the other names and dates of birth and, oh dear, they were all wrong. But why?

Then it dawned on me and now I was worried: the dates were all correct but they were lined up with the wrong names. In an instant I saw the horrible possibility: m ixed up names would be harmless in themselves but what if the group assignments (1 = drug, 0 = placebo) were lined up with the wrong results? That would render the whole analysis invalid… and oh dear. They were.

As the temperature of my blood plummeted I got up and lurched over to my filing cabinet where the raw data was stored on paper. It was deceptively easy to correct the mix-up and put the data back together. I re-ran the analysis.

No drug effect.

I checked it over and over. Everything was completely watertight – now. I went home. I didn’t eat and I didn’t sleep much. The next morning I broke the news to my supervisor. Writing that email was one of the hardest things I’ve ever done.Continue reading…

Personal Health Records: Will Doctors Connect?

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By JANE SARASOHN-KAHN

What doctors are most likely to use patients’ personal electronic health records? Fewer than 1 in 2 are willing to. Those who most likely would include Hispanic physicians, doctors who practice in rural areas, those employed in hospitals, and surgeons.

As part of the HITECH Act included in the American Recovery and Reinvestment Act (ARRA) 0f 2009, U.S. physicians have the opportunity to receive a portion of the $20.8 billion carved out as incentive payments to those who adopt and “meaningfully use” electronic health records (EHRs).

Many EHRs include portals which allow patients to access a slice of their personal health information. Some patients create their own personal health records that might be as simple as an Excel spreadsheet or as robust as Kaiser Permanente’s My Health Manager or the VA’s MyHealtheVet.

The format of the personal health record (PHR) aside, researchers from the AMA, University of Chicago and the Markle Foundation wondered how willing physicians would be to use patients’ PHRs. The results of their survey are published in the February 2011 issue of Health Affairs.

The bottom line is that physicians’ willingness to connect with patients’ PHRs varies by the doctor’s gender, clinical specialty, race, geographic location, size of the practice, and whether they are already using an EHR. The chart details these findings by physician characteristic.

The physicians who would least likely embrace patients’ would most likely practice in suburban geographies, in solo or duo practices, be female, and be in primary care or pediatrics. And those who don’t use an EHR currently are much less likely to be unwilling to use a patient PHR.Continue reading…

“Trust Us” Just Doesn’t Cut It

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By PAUL LEVY

I apologize in advance if some of you are tired of hearing about Massachusetts and its experience with different payment models for health insurance. I write about this, not only because it is interesting locally, but also because people around the US are watching to see how the experiments here might or might not be applicable to the rest of the country.

I have written before about the pro’s and con’s of capitated, or global, payments as an alternative to fee-for-service payments. There are arguments to be made in support of each. But the problem in this state is that the movement towards global payments has become a matter of religious dogma. The main practitioners of the system have not been willing to divulge the kind of information needed to evaluate it properly. That lack of transparency undermines the policy arguments that might be used to advocate for an expansion of this approach.

But, eventually, more and more of the story comes out, and it is less than pretty. A few weeks ago, I quoted a report by the state’s Inspector General in which he raises concerns about this issue. He noted, “[M]oving to an ACO global payment system, if not done properly, also has the potential to inflate health care costs dramatically.”

Now comes an article by Pippin Ross in Commonwealth Magazine, entitled “Piloting Global Payments.” It has some revelations that give credence to the concerns raised by the IG.

Ross quotes a Blue Cross Blue Shield official as saying:

Blue Cross padded first-year global payment budgets to entice hospitals and doctors to sign on…. [T]he current goal is not to actually reduce costs, but to cut in half the rate of growth in medical costs after five years.

[T]he outcomes after one year under global payment are where Blue Cross expected to be in three or four years. “The amount of money being spent hasn’t changed yet, but the outcomes are serious testimony to the fact that more—in tests and doctors and visits—isn’t always better,” she says. “We’re getting a lot more for our money than we expected.”

But, of course, we don’t really know, do we? We have no way to validate any of this. Sorry, but “trust us” just doesn’t cut it when it comes to this kind of significant change.Continue reading…

The Partnership for Patients: The Inside Scoop on a Game Changing Safety Initiative

By BOB WACHTER, MD

Earlier today, Secretary of Health and Human Services Kathleen Sebelius and Medicare chief Don Berwick announced the “Partnership for Patients,” a far-reaching federal initiative designed to take a big bite out of adverse events in American hospitals. The program – which aims to decrease preventable harm in U.S. hospitals by 40 percent and preventable readmissions by 20 percent by 2013 – marks a watershed moment in the patient safety movement. Here’s the scoop, along with a bit of back story (which includes a gratifying bit part for yours truly).

Last July, I attended the American Board of Internal Medicine’s Summer Forum in Vancouver. This confab has turned into medicine’s version of Davos, drawing a who’s who in healthcare policy. One of the attendees was an old friend, Peter Lee, a San Francisco lawyer and healthcare consumer advocate who had just been asked to lead a new Office of Delivery System Reform within the U.S. Department of Health and Human Services. Peter’s charge was to figure out how to transform the delivery of healthcare in America, challenging under any circumstances but Sisyphean given that he’d be pushing the rock up a mountain chock full of landmines comprised of endless legal and political threats to the recently-passed Affordable Care Act.

Fueled by the enthusiasm of being a new guy with a crucial task, Peter took advantage of some conference downtime to convene a small group – about 20 of us – to advise him on what he should focus on in his new role. After soliciting ideas from many of the participants around the table, he turned to me. I decided not to be shy.Continue reading…

To the Barricades!

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By DAVID DRANOVE

Last week, Republican Congressman Paul Ryan unveiled his plan to save Medicare and Medicaid. Supporters hailed the plan as revolutionary; critics decried the plan as revolutionary. For something so revolutionary, it sure is based on some old ideas.

In 1978, Stanford Business School professor (and my soon to be advisor) Alain Enthoven published an article in the New England Journal of Medicine in which he described his “Consumer Choice Health Plan.” Enthoven proposed tax-funded vouchers that all Americans could use to purchase health insurance. The amount of the voucher would be tied to income and individuals could use their own money to purchase a plan that cost more than their voucher. Enthoven even included some rules limiting the ability of insurers to cream skim healthier enrollees; new and improved versions of these rules are written into the insurance exchanges as part of the Affordable Care Act.

In 1986 I published a paper that described how states were trying to control Medicaid expenses by regulating the prices they paid to hospitals. I pointed out that states had surprisingly little interest in reining in hospital costs because the federal government paid for half or more of the Medicaid bills. The solution was apparent to any economist – convert the “percent of Medicaid spending” formula to a block grant, so that the states are 100% responsible for the costs of Medicaid expansions.Continue reading…

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