Can we at least try not to kill 440,000 patients per year?

Obamacare matters. But the debate about it also misdirects attention away from massive collateral damage to patients. How massive? Dig To Make Hospitals Less Deadly, a Dose of Data, by Tina Rosenberg in The New York Times. She writes,

Until very recently, health care experts believed that preventable hospital error caused some 98,000 deaths a year in the United States — a figure based on 1984 data. But a new report from the Journal of Patient Safety using updated data holds such error responsible for many more deaths — probably around some 440,000 per year. That’s one-sixth of all deaths nationally, making preventable hospital error the third leading cause of death in the United States. And 10 to 20 times that many people suffer nonlethal but serious harm as a result of hospital mistakes.

The bold-facing is mine. In 2003, one of those statistics was my mother. I too came close in 2008, though the mistake in that case wasn’t a hospital’s, but rather a consequence of incompatibility between different silo’d systems for viewing MRIs, and an ill-informed rush into a diagnostic procedure that proved unnecessary and caused pancreatitis (which happens in 5% of those performed — I happened to be that one in twenty). That event, my doctors told me, increased my long-term risk of pancreatic cancer.

Risk is the game we’re playing here: the weighing of costs and benefits, based on available information. Thus health care is primarily the risk-weighing business we call insurance. For generations, the primary customers of health care — the ones who pay for the services — have been insurance companies. Their business is selling bets on outcomes to us, to our employers, or both. They play that game, to a large extent, by knowing more than we do. Asymmetrical knowledge R them.

Now think about the data involved. Insurance companies live in a world of data. That world is getting bigger and bigger. And yet, McKinsey tells us, it’s not big enough. In The big-data revolution in US health care: Accelerating value and innovation (subtitle: Big data could transform the health-care sector, but the industry must undergo fundamental changes before stakeholders can capture its full value), McKinsey writes,

Fiscal concerns, perhaps more than any other factor, are driving the demand for big-data applications. After more than 20 years of steady increases, health-care expenses now represent 17.6 percent of GDP—nearly $600 billion more than the expected benchmark for a nation of the United States’s size and wealth.1 To discourage overutilization, many payors have shifted from fee-for-service compensation, which rewards physicians for treatment volume, to risk-sharing arrangements that prioritize outcomes. Under the new schemes, when treatments deliver the desired results, provider compensation may be less than before. Payors are also entering similar agreements with pharmaceutical companies and basing reimbursement on a drug’s ability to improve patient health. In this new environment, health-care stakeholders have greater incentives to compile and exchange information.

While health-care costs may be paramount in big data’s rise, clinical trends also play a role. Physicians have traditionally used their judgment when making treatment decisions, but in the last few years there has been a move toward evidence-based medicine, which involves systematically reviewing clinical data and making treatment decisions based on the best available information. Aggregating individual data sets into big-data algorithms often provides the most robust evidence, since nuances in subpopulations (such as the presence of patients with gluten allergies) may be so rare that they are not readily apparent in small samples.

Although the health-care industry has lagged behind sectors like retail and banking in the use of big data—partly because of concerns about patient confidentiality—it could soon catch up. First movers in the data sphere are already achieving positive results, which is prompting other stakeholders to take action, lest they be left behind. These developments are encouraging, but they also raise an important question: is the health-care industry prepared to capture big data’s full potential, or are there roadblocks that will hamper its use

The word “patient” appears nowhere in that long passage. The word “stakeholder” appears twice, plus eight more times in the whole piece. Still, McKinsey brooks some respect for the patient, though more as a metric zone than as a holder of a stake in outcomes:

Health-care stakeholders are well versed in capturing value and have developed many levers to assist with this goal. But traditional tools do not always take complete advantage of the insights that big data can provide. Unit-price discounts, for instance, are based primarily on contracting and negotiating leverage. And like most other well-established health-care value levers, they focus solely on reducing costs rather than improving patient outcomes. Although these tools will continue to play an important role, stakeholders will only benefit from big data if they take a more holistic, patient-centered approach to value, one that focuses equally on health-care spending and treatment outcomes.

McKinsey’s customers are not you and me. They are business executives, many of which work in health care. As players in their game, we have zero influence. As voters in the democracy game, however, we have a bit more. That’s one reason we elected Barack Obama.

So, viewed from the level at which it plays out, the debate over health care, at least in the U.S., is between those who believe in addressing problems with business (especially the big kind) and those who believe in addressing problems with policy (especially the big kind, such as Obamacare).

Big business has been winning, mostly. This is why Obamacare turned out to be a set of policy tweaks on a business that was already highly regulated, mostly by captive lawmakers and regulators.

Meanwhile we have this irony to contemplate: while dying of bad data at a rate rivaling war and plague, our physical bodies are being doubled into digital ones. It is now possible to know one’s entire genome, including clear markers of risks such as cancer and dementia. That’s in addition to being able to know one’s quantified self (QS), plus one’s health care history.

Yet all of that data is scattered and silo’d. This is why it is hard to integrate all our available QS data, and nearly impossible to integrate all our health care history. After I left the Harvard University Health Services (HUHS) system in 2010, my doctor at the time (Richard Donohue, MD, whom I recommend highly) obtained and handed over to me the entirety of my records from HUHS. It’s not data, however. It’s a pile of paper, as thick as the Manhattan phone book. Its utility to other doctors verges on nil. Such is the nature of the bizarre information asymmetry (and burial) in the current system.

On top of that, our health care system incentivizes us to conceal our history, especially if any of that history puts us in a higher risk category, sure to pay more in health insurance premiums.

But what happens when we solve these problems, and our digital selves become fully knowable — by both our selves and our health care providers? What happens to the risk calculation business we have today, which rationalizes more than 400,000 snuffed souls per annum as collateral damage? Do we go to single-payer then, for the simple reason that the best risk calculations are based on the nation’s entire population?

I don’t know.

I do know the current system doesn’t want to go there, on either the business or the policy side. But it will. Inevitably.

At the end of whatever day this is, our physical selves will know our data selves better than any system built to hoard and manage our personal data for their interests more than for ours. When that happens the current system will break, and another one will take its place.

How many more of us will die needlessly in the meantime? And does knowing (or guessing at) that number make any difference? It hasn’t so far.

But that shouldn’t stop us. Hats off to leadership in the direction of actually solving these problems, starting with Adrian Gropper, ePatient Dave, Patient Privacy RightsBrian Behlendorf, Esther Dyson, John Wilbanks, Tom Munnecke and countless other good people and organizations who have been pushing this rock up a hill for a long time, and aren’t about to stop. (Send me more names or add them in the comments below.)

11 comments

  1. Adrian Gropper’s avatar

    I think an IT fix based on undoing the information asymmetry is closer than we think. We do need to focus and organize to make it happen. Healthcare IT has a lot going for it that other VRM domains do not:

    - a larger void of price and quality transparency than any other major market
    - citizen rights to data access in digital form that are absent in less regulated markets
    - pervasive state-level surveillance programs (claims, prescriptions, records exchanges, disease registries) just begging to be open under existing public access laws
    - organized and socially networked patient groups and non-profits
    - physicians as potential allies as they realize that they too are screwed as a profession by the information asymmetry that serves institutions and regulated vendors.

    What’s conspicuously missing is optimism and focus around the IT infrastructure for reversing the information asymmetry. RESTful interfaces into service providers combined with voluntary identity management are within reach. What’s missing is clear and consistent messaging to organize patients and doctors. Our institutions will continue to suck all of the air out of the room as long as we remain timid and fearful.

  2. e-Patient Dave’s avatar

    Thanks for the hat tip, Doc.

    Another way to view the magnitude of the accident rate is in a big report published, I think, 3 years ago: an audit of Medicare records showed that 1.5% of all Medicare admissions [i.e. all over-65 admissions] ended in accidental death. Not death from the condition they went in for – an accident, acquired or caused by the hospital itself. Infection, medication error, you name it. I can dig it up if you want.

    In a VRM context, that sure as hell alters the calculus when considering whether to get a treatment, eh? “Oh by the way, it’s quite possible you’ll die by accident. You’re okay with that, right?”

    Re additional names to credit – there’s a vast vast ecosystem of people who’ve been railing about this issue for years and years – I don’t know where to start. Lucian Leape is a sort of godfather of the safety movement; @LeapfrogGroup, led by @LeahBinder has him as part of the expert panel that defined their safety measures (and their Hospital Safety Scores); National Patient Safety Foundation is a major force; Sue Sheridan had two medical catastrophes in her family and has worked with the W.H.O.; and on and on.

    Last year I proposed that we create a sort of “patient advocate hall of fame” to acknowledge the work they’ve done for so long. I’m happy the world seems to be waking up to the issues.

    I apologize to everyone I’m not naming – please everyone add names below. And here’s a list of patient safety organizations. http://www.pso.ahrq.gov/listing/psolist.htm Google “patient safety” for a lot more.

    Your buddy @JonL Lebkowsky has been working with the Consumers Union Safe Patient Project lately, too.

    It’s a massive culture change, in many ways. Most people know Obamacare is the Affordable Care Act. Its actual name is the Patient Protection and Affordable Care Act. Convenient how people drop that other piece off. Denial!

    I heartily recommend the new book “Design to Survive” by Pat Mastors, subtitled “9 Ways an IKEA Approach Can Fix Healthcare and Save Lives.” You might also like “How American Health Care Killed My Father” by TV executive David Goldhill.

    After 200+ speeches at medical events in the past 3 years, my antennas suggest we’re nearing a sort of “Unsafe At Any Speed” great awakening. One thing’s for sure, in my experience: the establishment (especially its dinosaur wing) has been pretty much counting on us not knowing about the harm, and has been counting on the reality that until the past year or so, extra costs caused by medical errors have been an upsell to them – they got paid both for screwing up AND for fixing it, sometimes over and over. That’s ending, largely.

    I think the next big step for the movement, enabled and kindled by that article, is for 2014 to be the year that community organizing starts up. I’m a noisy advocate, personally, but I don’t have those organizer skills. Looking to hook up with someone who does!

  3. Doc Searls’s avatar

    Thanks, Adrian and Dave. I’ll let additions to the credits list grow here in the comments. Meanwhile, Brian Behlendorf on the ProjectVRM list tipped his hat to Tom Munnecke, whom I added to the list above.

    On a separate matter, a guy I know died a few days ago from cancer of the everything. He had been feeling sick for awhile but refused to see a doctor. Finally his wife talked him into going, and it turned out he was at death’s door. Two days later he passed through. When I fired up Skype today I saw he was the last guy with whom I exchanged a chat. I bring his case up because, in a way, he was a casualty too.

  4. Bruce Fryer’s avatar

    Doc,

    It’s going to get worse. A lot worse. A couple of nights ago at a town meeting about Healthcare Reform, I was talking to the CEO of a Intermountain Health Care (IHC) hospital. His labor costs are about 55% of the total budget. With the changes in reimbursements, he is concerned about how to perform his mission.

    Because they don’t have access to good data, a lot of other CEOs are hacking their employees, especially nursing staff to improve their bottom line.

    http://health.usnews.com/health-news/hospital-of-tomorrow/articles/2013/09/20/is-obamacare-to-blame-for-hospital-layoffs-is-obamacare-to-blame-for-hospital-layoffs

    There will be even fewer people actually interacting, advocating and helping patients.

    Whatever you measure improves: Be careful what you measure.

    The good news is that PPACA is forcing more transparency and accountability. A lot of us in the healthcare IT companies know how to do what you wrote. But it boils down to money. The CEO and CFO want to have a proven ROI but it becomes a chicken and egg question; without investing in good analytics for outcomes and cost, you cannot justify the expense of the analytics in the first place.

  5. e-Patient Dave’s avatar

    Bruce, Intermountain has a great reputation for efficiency, capable management and innovation, under their leader Brent James. Many hospital leaders are vision-less whiners, but not this organization. So I’ll be very interested to see how they make it through the transition.

    One thing I know from all those conferences (and from a basic understanding of Lean) is that a whole lot of how things are done is grossly inefficient. Trying to squeeze more out the same workflow and resource utilization will absolutely fail. Meanwhile, some people are taking a clean sheet of paper and approaching the whole subject of health and care with new eyes, analogous to changes in the auto industry decades ago where instead of trying to squeeze new results out of old structures, they redesigned from the ground up.

    And they didn’t just redesign “care delivery” – they looked at *preventing* care by catching things earlier. The changes in reimbursement are not intended to reduce pay for work well done – the era of “accountable care” shifts the incentives, to keep people well and intervene early. That clashes with America’s conventional “fee for service” reimbursement system, which perversely rewards providers for doing more stuff, not for keeping us well.

    There are big exceptions – e.g. Kaiser has more HIV/AIDS patients than anyone else, and their cost per patient is half of the norm and patient status is at least as good. I heard their outgoing CEO George Halvorson speak yesterday. The company is no saint but they illustrate on this point that tightening the belt on a stupid design is not the answer.

    So I wonder what’s up with this Intermountain CEO. Brent James was the first I heard point out, years ago, that every year we accidentally kill more American patients than in the whole Vietnam war (58,200).

    And that comparison was back when we though the number was 98,000/year. The new report says it’s 4x more.

    I’ve imagined a Vietnam-era-style marches into the streets: “Out of the johnnies and into the streets! Stop the kiling now!”

  6. Doc Searls’s avatar

    Thanks, Bruce.

    I am reminded of something the great teacher John Taylor Gatto once said: “Every effort to improve public education only makes it worse.” (Thats not quite verbatim, but close enough.) Gatto also isn’t a big fan of testing. And, naturally, nearly every effort to improve education involves more testing, more analytics.

    What bothers me about the whole Big Data thing, especially in medicine, is that it’s mostly interested in populations, not individuals. My own long history of interaction with medical systems has been one of fighting being treated as a template. Improving templates may result in better outcomes overall; but will still ignore a fundamental human fact: we are all different.

    Until the patient becomes the point of integration for his or her own data, and the point of origination for what gets done with it, we will have template-exceptional medical errors.

  7. Adrian Gropper, MD’s avatar

    The Kaiser / Intermountain model for quality improvement is focused on the institution rather than the patient and that’s a risky proposition in THE information-based discipline in the information age.

    Justice Brandeis said “Publicity is justly commended as a remedy for social and industrial diseases. Sunlight is said to be the best of disinfectants; electric light the most efficient policeman.”

    Accessible and secure patient data interfaces (Blue Button Plus) are the electric light of our century. Big Data or not, we need to be suspicious of an industry that hides price, quality and even raw data from the citizen.

  8. Hanan Cohen’s avatar

    A somehow related video – Why Are American Health Care Costs So High?

    https://www.youtube.com/watch?v=qSjGouBmo0M

  9. Bruce Fryer’s avatar

    Doc,

    Actually the conversations we are now having is talking about the individual patient beyond patient satisfaction surveys. There are three factors:
    - Efficiency: Increase productivity
    - Efficacy: Only do things that work
    - Collaboration: Among providers, care givers and the patient

    A good way to think about this is ask the question: “What would Zappos do if they ran health care?”. Put Big Data in that context and you come up with some interesting new scenarios.

  10. du lich da lat’s avatar

    So I wonder what’s up with this Intermountain CEO. Brent James was the first I heard point out, years ago, that every year we accidentally kill more American patients than in the whole Vietnam war

Comments are now closed.