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Above the Fold

The Right to Be Forgotten

Apr 2, 2012

By Jeffrey Rosen

At the end of January, the European Commissioner for Justice, Fundamental Rights, and Citizenship, Viviane Reding, announced the European Commission’s proposal to create a sweeping new privacy right—the “right to be forgotten.” The right, which has been hotly debated in Europe for the past few years, has finally been codified as part of a broad new proposed data protection regulation. Although Reding depicted the new right as a modest expansion of existing data privacy rights, in fact it represents the biggest threat to free speech on the Internet in the coming decade. The right to be forgotten could make Facebook and Google, for example, liable for up to two percent of their global income if they fail to remove photos that people post about themselves and later regret, even if the photos have been widely distributed already. Unless the right is defined more precisely when it is promulgated over the next year or so, it could precipitate a dramatic clash between European and American conceptions of the proper balance between privacy and free speech, leading to a far less open Internet.

In theory, the right to be forgotten addresses an urgent problem in the digital age: it is very hard to escape your past on the Internet now that every photo, status update, and tweet lives forever in the cloud. But Europeans and Americans have diametrically opposed approaches to the problem. In Europe, the intellectual roots of the right to be forgotten can be found in French law, which recognizes le droit à l’oubli—or the “right of oblivion”—a right that allows a convicted criminal who has served his time and been rehabilitated to object to the publication of the facts of his conviction and incarceration. In America, by contrast, publication of someone’s criminal history is protected by the First Amendment, leading Wikipedia to resist the efforts by two Germans convicted of murdering a famous actor to remove their criminal history from the actor’s Wikipedia page.^[1]

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More PopHealth Lessons Learned

Apr 2, 2012

By John Halamka, MD

In the March HIT Standards Committee we highlighted 3 gaps in the standards needed to calculate quality metrics automatically from EHRs

1. A longitudinal (not encounter level) patient summary format to transmit appropriate data elements from an EHR to a quality measurement entity

2. A batch reporting format to transmit data elements for multiple patients to a quality measurement entity

3. Although PQRI XML and QRDA have been suggested for reporting data between quality measurement entities and organizations that use this data for payment/compliance, there is not a widely adopted standard for quality reporting in production today.

As I wrote in a wrote in a previous post, ONC/MITRE/BIDMC/Massachusetts eHealth collaborative worked together to evaluate the PopHealth tool with 2 million Continuity of Care Documents.

The full results of that analysis are now available and here’s the document for public circulation.

Key lessons learned include:

1. The CCD is a “post-encounter message” not a lifetime clinical summary optimized for quality measurement

The CCD/C32 was designed as an encounter level summary from a single organization. Each patient will have multiple CCD/C32s but there are no well defined process for merging CCDs from multiple institutions and applications. popHealth was expecting each C32 to contain the complete clinical history for one patient since quality measures are often focused on longitudinal treatment of patient, not a single encounter.

Will the Quantified Self Movement Take Off in Health Care?

Apr 2, 2012• 79

“If you cannot measure it, you cannot improve it.” Lord Kelvin

“Asking science to explain life and vital matters is equivalent to asking a grammarian to explain poetry.” Nassim Nicholas Taleb

Of course the quantified self movement with its self-tracking, body hacking, and data-driven life started in San Francisco when Gary Wolf started the “Quantified Self” blog in 2007. By 2012, there were regular meetings in 50 cities and a European and American conference. Most of us do not keep track of our moods, our blood pressure, how many drinks we have, or our sleep patterns every day. Most of us probably prefer the Taleb to the Lord Kelvin quotation when it comes to living our daily lives. And yet there are an increasing number of early adopters who are dedicated members of the quantified self movement.

“They are an eclectic mix of early adopters, fitness freaks, technology evangelists, personal-development junkies, hackers, and patients suffering from a wide variety of health problems. What they share is a belief that gathering and analysing data about their everyday activities can help them improve their lives.”

(http://www.economist.com/node/21548493/print)

According to Wolf four technologic advances made the quantified self movement possible:

“First, electronic sensors got smaller and better. Second, people started carrying powerful computing devices, typically disguised as mobile phones. Third, social media made it seem normal to share everything. And fourth, we began to get an inkling of the rise of a global superintelligence known as the cloud.”

Curing cancer: Too Important — and too Difficult — for University Researchers to Do Alone

Apr 1, 2012• 2

By David Shaywitz, MD

The central dogma of drug discovery is that academic basic research -> industry applied research -> new medical product. The disappointing number of impactful new medical products have been a source of endless soul searching, and could in theory be attributable to any (and all) of the steps in this model – and might also, as some have suggested, reflect the need for an entirely new conceptual framework.

The latest issue of Nature features a spot-on commentary (subscription only) by Glenn Begley and Lee Ellis (nicely summarized in this terrific Reuters article) that focuses in on the first arrow, the translation of academic oncology basic research into application by industry, and highlights the uncomfortable and inconvenient truth that by now isn’t a very well-kept secret: basic science is unbelievably fragile, and a lot of it doesn’t stand up to serious scrutiny.

This observation is absolutely consistent with my own experience and observations (see here, here, here, and here), as well as with those of Bruce Booth (this is a terrific discussion), and of course the pioneering research of Stanford Professor John Ioannidis, whose work I discussed six years ago (here), and who has been profiled extensively since (e.g. this piece from The Atlantic).

We could spend a lot of time discussing why science is fragile; Begley and Ellis, for example, emphasize the need for a cultural change in the way preclinical research is conducted, particularly in the field of cancer.

At the end of the day, I suspect that the problem involves some combination of the law of small numbers, the appeal of narrative, the structural advantages of reinforcing dogma, and the difficulties of publishing negative results that might challenge it, especially if the dogma was advanced by senior leaders in the field who tend to play critical roles in reviewing papers for high-profile journals and in selecting which new research gets funded. While the process may ultimately be self-correcting (and I certainly believe that science “works”), the cycle time for this can be a lifetime (literally – in some cases I’ve heard it said you need to wait for someone to pass away before contrary ideas can truly gain traction).

What If the Supreme Court …

Apr 1, 2012• 54

By Maggie Mahar

Consider these two scenarios.

What if the Supreme Court:

1). Strikes down the requirement that everyone buy insurance, or pay a penalty (a.k.a. “the individual mandate”), but leaves in place the rule that insurers are required to insure everyone — including those who are suffering from a preexisting condition?

or 2). Throws out both the individual mandate and the provision which says that insurers cannot either deny coverage , or charge higher premiums, if someone is already sick?

Begin with the first scenario: you are not forced to buy insurance, but when you get sick, insurers will be forced to cover you, charging the same rates they charge healthy people in your community (a.k.a. “community rating”).

What would happen?

GOP to Uninsured: (Feel Free to) Drop Dead

Apr 1, 2012• 21

By Michael L. Millenson

“We are now contemplating, Heaven save the mark, a bill that would tax the well for the benefit of the ill.”

That’s not a quote from oral arguments at the Supreme Court over the constitutionality of the Affordable Care Act or from one of the earnest conservatives demonstrating against it outside. It’s actually the beginning of an editorial in the Aug. 15, 1949 issue of The New York State Journal of Medicine denouncing the pernicious effects of health insurance. To be clear: not government-mandated health insurance, but all third-party health insurance.

I wrote about that editorial in a July 16, 2009 blog entitled, “GOP to Uninsured: Drop Dead.” My blog was prompted by a Wall Street Journal op-ed the previous day from Dr. Thomas Szasz, an emeritus professor of psychiatry, who counseled readers not to confuse ethics and economics:

The idea that every life is infinitely precious and therefore everyone deserves the same kind of optimal medical care is a fine religious sentiment and moral ideal. As political and economic policy, it is vainglorious delusion….We must stop talking about “health care” as if it were some kind of collective public service, like fire protection, provided equally to everyone who needs it….If we persevere in our quixotic quest for a fetishized medical equality we will sacrifice personal freedom as its price.

This was a month before Oklahoma GOP Sen. Tom Coburn, a physician, told a sobbing, middle-aged woman that “government is not the answer” after she confessed she couldn’t afford care for her brain-injured husband. The crowd of Coburn constituents gathered to discuss health care reform applauded. And it was before Texas Rep. Ron Paul, also a physician, responded evasively when asked by moderator Wolf Blitzer at a September, 2011 GOP presidential debate what should be done about an uninsured 30-year-old working man in a coma.

Is Health Insurance Too Cheap?

Mar 30, 2012• 9

By Peter Ubel, MD

Researchers at USC recently published a study designed to find out how much people are willing to pay for better drug coverage from their health insurance plan. The question they posed to the general public was straightforward: How much extra money would you pay per month for a health insurance plan that would pay for “specialty drugs” if you need them?

Specialty drugs are expensive new treatments for diseases like leukemia, multiple sclerosis and rheumatoid arthritis. These drugs often cost tens of thousands of dollars, and in some cases even run into six figures per patient. But these high costs can be accompanied by significant benefit. Gleevec for example can dramatically increase life expectancy for people with otherwise fatal leukemia.

Keep in mind that not only are specialty drugs expensive but they are being used with increasing frequency. According to the USC team, 3 out of 100 people in the United States will use at least one specialty drug in the following year.

How much would you pay to make sure you aren’t responsible to pay for these drugs out of pocket? Would you be willing to give your insurance company an extra $5 per month? $10? Maybe even $20?

The USC team found that, on average, people were willing to spend around $13 extra per month to make sure their health insurance plans cover such specialty drugs. (The study was published in the April issue of Health Affairs, and was led by John Romney.) To put that into perspective, the actuarial cost of such coverage—how much insurance companies would expect to spend per person if everyone obtained such coverage—is around $5 per month.

HealthTech: Peter Kinhan, GE Healthcare

Mar 30, 2012

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Peter Kinhan, general manager of Clinical Transformation Solutions for GE Healthcare, spoke with Matthew Holt at HIMSS12. Clinical Transformation Solutions is a business that will support GE and Microsoft’s new joint venture Caradigm.

What If We End Up with a Health Care System Like the One they Have In New Jersey?

Mar 30, 2012• 100

By Robert Laszewski

What would individual health insurance cost if the court strikes the mandate down and still requires insurers to cover everyone?

With the Supreme Court justices sounding like they might strike the mandate down, this is a question I’ve been getting a lot lately.

I have pointed to New Jersey as a real life example of what can happen when insurance reforms take place but there is no incentive for consumers to buy it until the day they need it.

In 1992, New Jersey passed health insurance reform that required insurance carriers to either offer individual health insurance on a guaranteed issue basis or pay an assessment to carriers that did. Other elements of the legislation were:

Guaranteed coverage and renewability for all eligible people regardless of their health status. A pre-existing condition exclusion does allow insurers to limit coverage during the first 12 months (a limitation which is not contained in the Affordable Care Act).
Guaranteed renewal of policies, provided (1) the insured does not become eligible for coverage under a group plan; (2) premiums are paid in a timely fashion; and (3) no fraud is committed by the insured.
Community rating of the premiums, with variation allowed only for family status (single, adult plus child, husband and wife, and family). (The Affordable Care Act allows rate variations of up to three times from young to old.)
Standardized insurance plans, referred to as Plans A, B, C, and D (indemnity options) and a single HMO plan.

Behind the New Autism Numbers

Mar 30, 2012• 10

By Rob Lamberts

Yes, I am going to talk about…autism. The last time I did so I was inundated with people trying to convince me of the dangers of immunizations and their causal link to autism. I really, really, really don’t want to go anywhere near that one.

No, I am not going to talk about the cause of autism; I am going to talk about my observation of the rise of the diagnosis of autism, and a plausible explanation for part, if not most of this fact. The thing that spurs me to write this post is a study by the CDC which was quoted in the NY Times:

The new report estimates that in 2008 one child in 88 received one of these diagnoses, known as autism spectrum disorders, by age 8, compared with about one in 110 two years earlier. The estimated rate in 2002 was about one in 155.

The rise in numbers is cited as one of the main evidences for some external source – a new thing in our environment – that is causing this rise. The article, however, gives another clue:

The frequency of autism spectrum diagnoses has been increasing for decades, but researchers cannot agree on whether the trend is a result of heightened awareness, an expanding definition of the spectrum, an actual increase in incidence or some combination of those factors. Diagnosing the condition is not an exact science. Children “on the spectrum” vary widely in their abilities and symptoms, from mute and intellectually limited at one extreme to socially awkward at the other.

Children with such diagnoses often receive extensive state-financed support services — which some experts believe may have contributed to an increase in numbers.

That last sentence holds the golden ticket. What would make me think this? My experience.