After dutifully observing that only a tiny percentage of Americans use medical services of any kind, JASON is informing us that the government agencies that funded its work “specifically” asked the group “to address how to bridge, on the national scale, to a system focused on health of individuals rather than care of individuals” [italics in the original]. It seems that the overdetermined triple aim of health care reform, better health for populations, better care for individuals, at lower per capita costs, is finally being reformulated into a solvable optimization problem by removing the unprofitable constraints on caring for the sick.
As was the case with the previous JASON report, the group was briefed by a diverse array of researchers and technology experts, including the great new hope of health, our most beloved, innovative, tax evading, and slave labor supported, Apple Inc. The content of briefing sessions is not available to mere mortals, but one in particular is rather enlightening in its title: “Disrupting the Status Quo: Putting Healthy People First”. Never since the dawn of medicine, from Hippocrates, to Florence Nightingale, to Mother Teresa and today’s Doctors Without Borders, have we experienced greater disruption in the status quo.
Similar to the first JASON report, the second offering is chockfull of technical recommendations for the “collection, assimilation, and exchange” of quantifiable “data streams” emanating from living things, whether in traditional medical surroundings or as people go about living their healthy lives. There is nothing earth shattering in the JASON findings or recommendations, but some finer points may be worth mentioning anyway.
Phenotypes - After providing us with a crash course in genomic sequencing and the workings of RNA and other protein molecules in the first report, JASON argued that the “biomedical research community will be a major consumer of data from an interoperable health data infrastructure”, hence the government “should solicit input from the biomedical research community to ensure that the health data infrastructure meets the needs of researchers”. In the second installment, JASON is reiterating its obviously very strong interest in genotype-phenotype relationships and their assimilation into the IT system they are recommending we build. Luckily, some of the JASON briefers happened to hail from academic centers renowned for grant funded genomic research in general, and efforts to “develop algorithms and methods to convert EHR data into meaningful phenotypes” in particular.
In Vivo - I have to admit that compared to run of the mill interoperability papers, which deal with unconscious patients in the ER, or people irritated by having to fill out paper forms, the JASON report is much more interesting. Here is another supercool futuristic development that we absolutely must consider when creating an IT infrastructure to collect data for health related research, which is essentially the main concern of the JASON group. It seems that the Defense Advanced Research Projects Agency (DARPA) is working on in vivo nanoplatforms. Something about “ultra-small scaffolds inserted directly into the body” and “fluorescent nanospheres that are functionalized to detect biomarkers of interest”. The purpose seems to be “continuous physiological monitoring for the warfighter”. We do of course want to support our troops, so these cute little nanites must also be part of our robust health data infrastructure.
FHIR - In this report JASON is taking an unequivocal stand behind a new HL7 standard for clinical information exchange, the Fast Healthcare Interoperability Resources (FHIR), which is actually pretty neat, and has been in development for approximately three years. FHIR is envisioned as a replacement for the C-CDA, which replaced the CCD, which replaced the CCR, which replaced an array of HL7 2.x messages. JASON is recommending that government “policies should make it advantageous for one or more leading EHR vendors to be the first to propose such standards”. Lo and behold, two days after the JASON report was published, a group of leading vendors and institutions, several of which briefed JASON, and some who are helping the government implement JASON’s recommendation, launched the Argonaut Project for precisely this “advantageous” purpose.
FDA - For some reason the JASON report is engaging in a lengthy and strangely passionate litigation of the 23andMe (a DNA analysis service) tiff with the Food and Drug Administration (FDA) from a year or so ago, concluding with a recommendation that the FDA should take a “more nuanced approach” to its regulation of apps that could be construed as “practicing medicine”. The FDA regulatory authority over medical software has been in the crosshairs of corporate lobbyists (tech, pharma, telecom, etc.) for a couple of years now, with a variety of bipartisan deregulation bills introduced, or almost introduced, unsuccessfully in Congress. Coincidentally, two days after the publication of the JASON report, Senators Bennet (D-CO) and Hatch (R-UT) introduced the MEDTECH Act, the most serious attempt so far to restrain the FDA’s regulatory abilities.
Non-profits – JASON is recommending that non-profit organizations, either those that are disease specific or general in nature, “should be encouraged to assess their goals with respect to health data streams, and to provide “stamps of approval” for applications (apps) and other consumer tools”. In other words non-profit organizations should leverage the trust of their communities to monetize their members’ health data. JASON also recommends that private foundations should help the government by creating cash prizes to entice entire communities into participation in data wellness games. This is brilliant thinking, which leads me to hypothesize that at least one of the JASON members must be a Nobel laureate in marketing.
In this era of “transparency”, where every dollar from every pharmaceutical company or government agency, paid to every doctor and hospital, comes under relentless public scrutiny, why should JASON be exempt? Shouldn’t the JASON reports be accompanied by full disclosures of conflict of interest, both for JASON members and the various briefers whose pet projects populate every page of every report? Where is the media when a group of secretive researchers and private corporations are steering almost 20% of our economy towards endeavors immediately beneficial first and foremost to themselves?
When you read the JASON reports back to back, you are left with the impression that the group’s overarching goal is to create an international distributed repository of genetic materials tied to individual, environmental, behavioral and disease specific manifestations for all people on this planet. There is no doubt in my mind that a structure of this type and magnitude can facilitate an infinite number of perhaps beneficial research projects, and maybe even an IPO here and there. But if taxpayers are expected to fund the infrastructure for such expansive research, shouldn’t they be asked, or at the very least clearly informed?
And why rob the President of the United States of a legacy-defining “We choose to go to the moon” speech? It could go something like this: My fellow Americans, by 2025 every American will have his or her DNA collected and catalogued, and by 2025 every movement and every breath of every American man woman and child will be associated with their genomic sample, launching the grandest experiment in the history of mankind. From the ashes of the Great American Experiment, we will bring you more than freedom, more than liberty and more than a futile pursuit of happiness. We will bring you, Health. Download it for free from iTunes today.
In 1802, Thomas Jefferson wrote in a letter to David Hall: “We have no interests nor passions different from those of our fellow citizens. We have the same object: the success of representative government. Nor are we acting for ourselves alone, but for the whole human race. The event of our experiment is to show whether man can be trusted with self-government. The eyes of suffering humanity are fixed on us with anxiety as their only hope, and on such a theatre, for such a cause, we must suppress all smaller passions and local considerations.” Whatever.
The rightwing conservative media savored their “I told you so” moment with great gusto. The leftwing media immediately rose to the occasion reiterating the litany of Obamacare benefits, which should not be forgotten just because this one guy said that we are all idiots. Mr. Gruber himself expressed “regret” for his “off the cuff” remarks. Perhaps they don’t teach linguistics at MIT, but “off the cuff” is not a synonym for erroneous. David Axelrod declared on Twitter that Mr. Gruber is the one who is stupid and the White House assured us that nobody there shares Mr. Gruber’s opinions. Some Congressional leaders, seemingly afflicted by the Iran-Contra syndrome, couldn’t remember who Mr. Gruber was, while others decided to bring Mr. Gruber in for questioning. Reality TV doesn’t get much better than this.
But what if Mr. Gruber is right? What if we are stupid? Not each and single one of us, and not all day, every day, but every two years or so when we come together to form the American electorate. Here is a dirty little public secret: many of us share Mr. Gruber’s opinion, albeit in a more eclectic format, and many of us have no problem publicly broadcasting our views. Liberals believe conservatives are too stupid to understand that Medicare is a Government run program, too stupid to understand scientific concepts, and stupid enough to go to war over imaginary threats. Conservatives believe liberals are too stupid to understand the Constitution, too stupid to grasp the basic concepts of freedom & liberty, and stupid enough to hand over our democracy to a fascist communist Islamic emperor on a platinum fundraising event platter.
Perhaps instead of gleefully watching the Gruber spectacle, we would be better served by trying to figure out why our collective actions look stupid when viewed from the elevated vistas of our rarefied intelligentsia. Using health care reform as an example, although there are many more equally instructive subjects, here are a couple of recent teachable moments that could explain our tarnished image.
California Proposition 45
On November 4th, California voters “soundly rejected” a proposition “that would have halted excessive health care insurance rates”. It seems that California voters like paying excessive prices for their health insurance, and if you like your excessive prices, you should be able to keep them. Alternatively, one could be tempted to surmise that California voters are too stupid to understand what they are voting for. Earlier this year, Californians expressed massive support for Proposition 45. Between then and Election Day a $43 million media blitz, financed mostly by insurance companies, descended upon California to convince voters that allowing health insurance corporations to steal their money, unencumbered by public regulations, is a good thing. It worked.It may be worth mentioning that the non-profit Kaiser Permanente poured almost $15 million of its tax exempt revenues into defeating Proposition 45. Back in 2009, while the Affordable Care Act was being shaped, President Obama held out Kaiser Permanente as “one of the models of high-quality, cost-efficient care” that “would have solved our problems”, based on the experience of his grandmother in Hawaii. We may need to broaden the usage of epithets beyond the plebeian electorate.
But the one thing that breaks my heart in the Proposition 45 surreal, yet typical, chain of events is that almost without exception, California medical associations chose to align with and actively support the insurance industry. The same insurance industry that is treating doctors like commodities, firing them from networks at will, and is routinely robbing them of professional autonomy. TV commercials featuring real physicians, sporting white coats and stethoscopes, abusing their trusted relationships, reciting outlandish prophecies that no one can verify, littered the public airwaves in California this fall. Practically every organization whose members are paid with health care dollars threw its support behind this willfully deceptive campaign to defraud the people of California.
Insider Trading
Back at the start of 2013, the Centers for Medicare and Medicaid Services (CMS) indicated that payments to Medicare Advantage plans are “likely to decline by 2.3 percent in 2014”. On April 1st of 2013, CMS reversed its decision and released final Medicare Advantage rates for 2014 that showed an increase in payments following a “change in methodology”. Turns out that a Congressional staffer provided information to a lobbyist, who passed it on to an analyst, triggering a buying spree of health insurance stocks prior to the CMS announcement and lots of rich people got richer. The New York Times dutifully published an article in its business section outlining the insider trading investigation recently initiated by the Securities and Exchange Commission for this event.Leaving this particular outrage aside, one might wonder about the nature of this “change in methodology” that triggered an increase in Medicare Advantage payments. Did the CMS revise its calculations? Did the original figures contain arithmetic errors? As it turns out, this is not about math. An email from the lobbyist to the analyst indicates that rates were changed because “a deal has been hatched to increase Medicare Advantage rates in order to smooth the confirmation of Marilyn Tavenner as the new head of Medicare”.
Unlike her predecessor, Dr. Donald Berwick, who is a staunch liberal with a long record of public statements to that effect, Ms. Tavenner was an uncontroversial appointee, with no political (or any other) damning baggage, and as such enjoyed the support of large swaths of the industry, as well as powerful Republican officials, such as Sen. Chuck Grassley and Rep. Eric Cantor. But that was hardly enough. It seems that today in America, the lawfully elected President of the United States, and the lawfully elected Congress, in order to perform the most mundane functions of their respective offices, must first grease the palms of health insurance companies. And the saddest part is that neither The New York Times, nor any other media outlet, thought this to be newsworthy.
Other Grubers
Mr. Gruber is just the latest public figure to express regret for being caught. Back in 2012, Gov. Romney had to stage a tortured apology for calling half the country irresponsible bums. Last year, the powerful Director of National Intelligence James Clapper, apologized for blatantly and intentionally lying to Congress about covert surveillance of most Americans. Just a few days ago, Uber’s CEO Travis Kalanick, staged a ridiculous Twitter apology for explicit threats to unfriendly journalists made by another Uber executive behind closed doors. Facebook apologized for experimenting on its users and Google constantly apologizes for snooping around without permission. We now have an entitled class that regrets only the inconvenience of having its business and opinions exposed, and subsequently used by their opponents in the power games played by the rich and famous.Mr. Gruber rightfully did not apologize for his remarks, because they were authentic and truthful as most “off the cuff” utterances are. From the vantage point of our elected government and its diverse assortment of greedy consultants, the American electorate must indeed look pretty stupid. And from the higher perches of billionaires and corporate interests, both American voters, and their seemingly elected officials, must appear as the sheer embodiment of laughable stupidity. Instead of reflexively shooting the unsavory messenger, perhaps we should thank him for the heads up, look at ourselves in the mirrors held by great power and great wealth, and take stock of what we have become as a nation. We can do this, precisely because in spite of acting like a bunch of idiots lately, we are not, and never have been, stupid.
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