The Data Agenda

Monday, June 27, 2016

Data = Cures ?

The following are comments as submitted on the proposed rule for implementing MACRA. Links have been added for reference and emphasis for readability.

Some say that "harnessing the wealth of information in EHRs and other troves of real-world data" will help us "get new cures."

Others may build on this claim adding this supposedly overrules all the concerns about inefficiency and documented harm to patients by the data collection process itself, especially in the emergency room and in critical situations like anesthesia.

Assuming there were none of those risks, what of the ultimate claim itself, that having the data somehow inherently means having a cure?

That is a hypothesis. Where is the testing of this hypothesis? Where has this been observed? Where is the data itself on this supposed value of massive data collection? How is this any more scientifically sound than saying, "Now that we can see cancer, we know how to cure cancer"?

With no basis for this claim, it is only a hypothesis, and a cynical one at that which plays on people's hopes, fears, and vulnerabilities. After all, what sick or dying patient or family member will turn away any sign of hope for extending the life of someone they love?

It's helpful to ask if this makes sense, even if it sounds logical. It does sound logical, too: If the disease is in the body, and if we had data on the disease, then we should be able to figure out what's going on and fix it, right?

About 100 years ago, not long after radioactivity was discovered, there were some in the medical community who thought there was radioactivity in the human brain. Absurd, yes? How will it sound in 50 years that some people claimed just because mankind could create certain data structures for holding information about the condition of the human body and genome, and fill those data points, that we would thus be able to cure more diseases?

There are some who say that big data algorithms can "see things in the data that people cannot see." A couple analogies illuminate this claim. Have you seen how algorithms do automated trading? They look like a machine with very regimented and regular trades. Another example would be the scene in The Hunt for Red October where he speeds up the sound of what they thought were whales and when he plays the rapid and continuous pounding sound it was obvious that they had heard a man-made machine instead. The human body, and diseases for that matter, are living and are not man-made machines. Man-made algorithms will see algorithm-like things in the data.

To say nothing of the medical and political risks involved with this massive enterprise on many levels, the results may be that we have nothing more than more data than ever on human beings, the condition of their bodies, their behaviors, their ailments, and still be little closer to these elusive new cures.

We have more data on the weather now than ever before. Does this mean we can solve hurricanes and tornadoes? Short of that, are we any better at forecasting the weather more than a few days out? Or have we simply learned that the weather and all the factors that play into it are more complicated than we had ever imagined?

Here's an analogy for lawyers. Imagine someone created a system for electronic legal records (ELRs) to collect all data about all legal cases ever into a massive interoperable database on legal cases. Attorneys would only be paid by the government, and they would be incentivized for reporting data correctly and getting clients to correct the government's records, and penalized in payments for not complying. All this is done so that the data could be run through algorithms that can see things in the data that people can't see. Would that mean the end of litigation? Or would this be a formula for opening the floodgates of litigation?

Without any scientific basis for the belief that data and algorithms simply lead to cures, we may be on the most expensive path ever to find out something that could already be plainly evident.

Knowledge has greatly increased through science with the testing of hypotheses and comparing them to collected data. There is an established pattern and precedent for these things and the value they produce. Data, in the right context, with the right constraints on how it is gathered, with an appropriate amount of space to let the process work, indeed has its uses.

For those who would claim there is only value in massive comprehensive data sets, and claiming it is essential to cast aside privacy concerns, it's appropriate to check for conflicts of interest. Most everything of value starts small and grows. If someone claims there is only value in bigness and not growth, that is highly suspect.

Friday, October 30, 2015

2 Sides of Watson

You may have seen the ads IBM has been airing for its Watson system recently. Here is one of them:

So cute and friendly, right?

Watson is IBM's cognitive computing system. IBM explains, “to understand the power of Watson, we must first understand cognitive computing and how it enhances, scales, and accelerates human expertise.”

Fast Company ran an article about Watson in its November 2012 issue.

By way of background, the article explains, “The way Watson solves problems—or, rather, the way it looks for answers, simultaneously sending out thousands of inquiries in all directions and then scoring the evidence it collects—is different from how other computers work. One person at IBM likens Watson's process to (1) gathering hundreds or thousands of possible solutions from a vast data bank, (2) pouring them into a giant funnel, (3) stirring with a dash of algorithms, and (4) letting only the best drip out of the bottom.”

A dash of algorithms? Who needs to explain chemistry when you can just make it sound like alchemy instead?

This human-created system must be beyond humans if “Watson can ingest more data in a day than any human could in a lifetime.”

Two quotes from that article stand out, and they stand in stark contrast to one another.

Friday, February 20, 2015

Focusing on Replacing ACA is a Bad Idea

1. It's a Trap

Democrats passed the Affordable Care Act on their own in 2010, and they know it has been an albatross around their necks ever since. It painted huge targets on them. The elections in 2010 and 2014 are clear evidence of this, as was their silence on their “signature domestic achievement” during 2012.

Their easiest and safest response to ACA opposition has been to ask “With what would you replace ACA?” It's a simple divide and conquer strategy.

Two things can happen with a focus on replacement: (1) Too many proposals pop up, ACA opposition unity becomes dispersed, and Democrats try to run out the clock on ACA being a hot issue. (2) Republicans indeed compile an alternative, it becomes the target instead, and ACA replacement unity is still not as strong as it would be for pursuing outright repeal.

Either way, if Democrats can get and keep Republicans' focus off of the problem and on to their distraction, the law stands.

2. Cancer does not need a replacement

The Affordable Care Act is not just an inferior law or bad policy on which we can supposedly improve. It is an actively corrosive agent in the health care system. It is a cancer eating away at what has been the crown jewel, not just of the United States, but of the world in terms of providing true quality medical care.

The flawed fundamental premise of ACA is one of providing care to populations instead of individuals. The same level of care must be available to everyone at any time, no matter the level of need. For the sake of “a woman no longer being a preexisting condition,” regulations promulgated as a result of the law now require covering maternity services for retired men.

ACA implements a political ideology that creates all kinds of unnatural pressures based on political ideology instead of reality-based exchange of services for real needs. The excessive and unnecessary additional work loads on our medical professionals and clinicians take their toll, and the damage continues.

ACA also vastly increases the risk of political corruption.

Wednesday, April 23, 2014

The Premise of ACA

A recent discussion on LinkedIn about a Bloomberg View article last month recently included this comment:

Young Invincibles "who truly can't afford to purchase health insurance are eligible for subsidies to make it more affordable. Why should i continue to subsidize them because they don't think about the possibility that they are one car accident away from bankruptcy? The premise under the ACA is that everyone carries part of the load, and for the vast majority of Americans the cost increases aren't as big as they seem (because now we won't be subsidizing the uninsured as we have in the past if the YI will enroll) or they are actually seeing cost decreases as I have."

"one car accident away from bankruptcy" does not mean much to someone just starting in their career who doesn't have much anyway, nor does it mean much to people who have never accumulated much by way of assets.

The premise of ACA is that it can transform a health care market built around the individual and turn it into a single system for a population ("the load"). Even when insurance provided a way for individuals to group together for insurance, the primary unit was still the individual. It's a subtle shift in language to go from talking about "group insurance" to the health of populations, but it's a massive shift for what it means in terms of who is responsible, who pays, how success is measured, and who has control.

It's ironic to talk about how "we won't be subsidizing the uninsured" at the same time we talk about "subsidies to make it more affordable." The main difference is the now open intent to redistribute wealth.

Everyone agrees government spending on health care is unsustainable and needs to come down. The question is, will that be done by individuals or on the basis of populations?

Thursday, January 2, 2014

A Harvard Question

Tonight the Harvard Business Review asked a question:

The question makes three assumptions:

Friday, December 20, 2013

ACA Transactions Not Completing

The next obvious shoe to drop in the series of bombshells the Affordable Care Act is leaving on the American health insurance market is round two of the you-really-can't-keep-your-insurance reality: small group policies.

Press coverage of this issue should be abundant in 2014 as the line between "do you or don't you have coverage" is both clear and potentially widespread, and maybe much wider than the individual market.

Less obvious are the data integrity problems on the back-end that could render supposedly active policies useless.  That is, even if you are told you have "coverage," acting on that could be problematic.

Monday, December 16, 2013

ACA's ban on health insurance

For those 30 and older (counting from "the beginning of the plan year"), catastrophic health insurance is not an option under the Affordable Care Act. For those under 30, catastrophic plans are still allowed.

From the text of Public Law 111-148 (emphasis added):


(e) Catastrophic Plan-