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Healthcare’s Deadly Data Problem

Screen Shot 2015-10-09 at 8.03.52 AMI have read with interest the ongoing conversation about the ProPublica Surgeon Scorecard in THCB and beyond, not because I believe this latest effort at measuring quality will have a significant effect on patient care, but because behind the latest public metric debate – in fact behind all healthcare metric debates – is a major systemic problem.  This problem somehow always seems to remain unseen.  We acknowledge that measuring healthcare quality is difficult and that using medical data is challenging, but I’m not convinced that people completely understand why or how measurement and data are so difficult in healthcare…nor am I certain that everyone understands the repercussions of those challenges.  

As I wrote here, the most promising recent development in medicine is the emphasis on learning from our data.  We are finally digitizing records of clinician and patient interactions via the adoption of EMRs.  Data warehousing technologies are connecting healthcare’s disparate systems and making data accessible to decision makers.  Data will be the foundation for healthcare improvement.  However, it is dangerous to assume that accessing raw data is equivalent to accessing relevant information.

All of today’s widely adopted EMR systems were designed to fulfill three purposes:  financial reimbursement, narrative communication among clinicians, and legal protection.  Now, we aim to use that data for very different purposes: the improvement of health and the discovery of process efficiencies.  The impact of the resulting inconsistencies between design and use cannot be overstated, and yet no one else seems to be stating those impacts at all.  

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Pink is The New Black

Pink is the new black this October, which marks the 30th anniversary of National Breast Cancer Awareness Month. NFL players are clad in bright pink shoes and wrist bands. American Airlines employees are wearing pink uniform accents and serving complimentary pink lemonade. Police departments across the country are patrolling in pink cruisers. It’s all for a great cause. The money and awareness raised through this campaign helps to fight an insidious disease that will kill more than 40,000 women in the U.S. this year.

But the feel-good spirit is clouded by ongoing debate around the value of breast cancer screening, which is sure to be reignited by the recent announcement of new guidelines by the American Cancer Society. A recent study by JAMA Internal Medicine concluded that more frequent mammography screening results in the “widespread overdiagnosis” of breast cancer, and one its authors opined that, because of the harms caused by false alarms and unnecessary treatment of non-life threatening cancers, we should be doing fewer screenings, not more. This logic is based on data that shows more screening is associated with detection of small cancers but not with serious late-stage cancers or the overall death rate due to breast cancer.

The controversy over too much or too little mammography is completely missing the point. The real problem is our one-size-fits-all approach to breast cancer screening. It doesn’t work—especially not for the nearly 50% of women in the U.S. who have dense breast tissue.

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Defining Interoperability: An Interview with Grahame Grieve

flying cadeuciiGrahame Grieve is a long-time leader within HL7 and one of the key drivers behind FHIR. He chats with Leonard Kish about what’s been happening and what’s ahead for interoperability.

LK: First tell me how you got into standards… it’s kind of an odd business to get into.  Why have you chosen this and why are you excited about it?

G: It happened by accident.  I was working for a vendor and we were tasked with getting some exchanges and I wanted them to be right the first time.  That was the philosophy of the vendor.  If we did it right the first time, then we wouldn’t have to keep revisiting and that meant that using the standards correctly.  The more I got involved, the more I discovered that it wasn’t obvious how to do that…and that the standards themselves weren’t good.  I felt personally that we need really good standards in healthcare.  So it became a personal mission and I got more involved through the company I was working for and eventually I left so I could continue doing what I wanted doing with the standards – I enjoy the community aspect of the standards and feel very strongly that it’s worth investing time in and I had the opportunity to build a business out of it, which not many people do. So now I freelance in standards development and standards implementation.

LK: There’s a lot of talk in Congress about the lack of interoperability and everyone probably has their own definition. Do you have a working definition of interoperability or is there a good definition you like for interoperability?

G: The IEEE definition to get data from one place to another and use it correctly is pretty widely used.  I guess when you’re living and breathing interoperability you’re kind of beyond asking about definitions.

LK: Are there ways to measure it then?  Some people talk about different levels; data interoperability, functional interoperability, semantic interoperability.  Are there different levels and are there different ways to measure interoperability?

G: We don’t have really have enough metrics.  It’s actually relatively easy to move data around.  What you’ve got to do is consider the costs of moving it, the fragility of the solution, and whether the solution meets the user’s needs around appropriateness, availability, security, and consent.  Given the complexity of healthcare and business policy, it’s pretty hard to get a handle on those things.  One thing that is key is that interoperability of data is neither here nor there in the end because if providers continue with their current work practices, the availability of data is basically irrelevant, because they treat themselves as an island. They don’t know how depend on each other.  So I think the big open area is clinical interoperability.

LK: Interoperability in other verticals mostly works.  We hear talk about Silicon Valley and open APIs.  There’s perhaps less commotion about standards, maybe because there are less conflicting business interests than in healthcare.  Why is healthcare different?

G: First of all – from an international perspective, I don’t think other countries are by and large better off or different (where incentives are different).  They all have the same issues and even though they don’t have the business competition or the funding insanity that you do in the US, they still have the same fundamental problems.  So I hear a lot of stuff from the US media about that and I think it’s overblown.  The problem is more around micro level transactions and motivations for them and fundamentally the same problem around getting people to provide integrated clinical care when the system works against them doing that.                  

LK:  So can you give me an example of how things are maybe the same with NHS or another country vs. the US in terms of people not wanting to exchange clinical data?

G: In Australia, there’s a properly funded medical health care system where the system is overwhelmed by the volume of work to be provided.  No one get’s any business benefit from not sharing content with other people. Still, because you have to invest time up ahead to exchange data and other people get the benefits later, there’s very low participation rates for any kind of voluntary data sharing schemes that you set up. There’s scandalously low adoption rates.  And that’s not because it’s not a good business idea to get involved but it’s because the incentives are misaligned at the individual level (and the costs are up front).

LK: Right, so it’s maybe it’s also a lack of consumer drive?  It’s there data and you’d expect the incentives to align behind them, but they don’t ask and don’t get, maybe because we (or our providers) only access your record when we really need them.  It’s not like banking or email or other things we use on a daily basis?    

G: Probably that’s part of it, but from a consumer’s point of view, what does it do for them getting access to their data?  Continue reading…

The Writing Is On the (Healthcare) Wall

flying cadeuciiFor the past few months I have been traveling around the globe. In my travels I have been talking to “leaders” from Ministries’ of Health, Insurance Companies, Hospitals, Physicians, and Professional Societies.

In many of the conversations I continue to hear more of the same story:

In order for change to happen, the incentives need to be in place.

Things such as, “…in order for physicians to adopt, the incentives need to support the actions.”

“…until incentives align it is difficult for hospitals to adopt changes in care models.”

“…in order for me to spend more time with patients the payment models need to align accordingly.”

Repeatedly I hear that in order for people to make changes inside of healthcare,that the money trail needs to lead the charge.

Yes, that worked so well with the adoption of EHR/EMR.

Leaders followed the dollars only to adopt and implement data archives that do not talk, interact, or share knowledge across the care continuum for patients.

Since when do “leaders” follow?

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Why Health Care Providers Should Publish Physician Ratings

Ashish JhaEarly efforts to publish performance data about doctors and hospitals usually required a strong external force, such as pressure from a state department of health. But that’s changing. Some leading health care systems are now publishing ratings of their physicians on their own websites, not just ceding that activity to consumer outlets. This development may seem small, but if the trend grows, it will drive improvements in the quality of care. To envision that potential transformation, you first have to understand some of the origins of physician and hospital ratings.

In 2005, the Centers for Medicare and Medicaid Services (CMS) launched Hospital Compare, which publicized data on hospitals’ compliance with process-of-care metrics (for instance, whether a patient with pneumonia received the correct type of antibiotic, according to the medical evidence). The CMS system now also reports clinical outcomes, infection and rehospitalization rates, and other data. But all the evidence suggests that consumers are not using that information to make health care choices, mainly because the reports are hard to digest and often don’t convey information that matters to patients.

Given the limitations of public reporting, several companies have jumped into the ratings business. U.S. News & World Reporthas long been publishing its America’s best hospitals list, and experienced consumer outlets such as Yelp, Consumer Reports, Leapfrog, and Healthgrades now offer up user-friendly ratings of physicians and hospitals. It’s tough to gauge how extensively consumers use this information, but the number of outlets that rate physicians by name is clearly growing. Even if providers and policymakers resist the trend, the market is making it happen.Continue reading…

Stop Calling Them Patients!

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We have a healthcare system that is provider-centric indeed.  Why else would we call the consumers of their services “patients?”  Perhaps because they have to be patient.  Patient because they have to wait long after their appointed hour to be seen.  Patient while waiting in the Emergency Room.  Patient because the healthcare system is rigidly resistent to change.  Patient because even the most advanced providers measure quality based on “best practices” rather than outcomes.  Do you care about whether your physician employed best practices if your outcome was bad?  Ummm, nooo.

So let’s rename patients right now.  How about “consumers?”  For sure they are, although in today’s dysfunctional healthcare “system,” they rarely pay the providers whose care they consume.  But let us not hesitate over that anomalie, which may be slowly changing.  Up to now, we as consumers of healthcare rarely even choose our providers.  They are chosen for us by other providers.  And if we want to be good shoppers and choose ourselves?  How do we do that when we cannot determine how much a provider costs or how good he or she is?

Oliver Wyman’s Tom Main and Adrian Slywotzky got it right when they opened their superb article with the following observation:

“For many people, the word “consumer” sounds out of place in a discussion of healthcare.  And indeed some of the woes of our system arise precisely from our (mostly ineffective) effort to keep commerce away from medicine.  We thought we were protecting the autonomy of physicians, but inadvertently we created a system that rewards waste and failure and makes it difficult to deliver optimal care. Continue reading…

Why Does the FDA Approve Cancer Drugs That Don’t Work?

Brian-Klepper

A new study in JAMA Internal Medicine finds that two-thirds of cancer drugs considered by the US Food and Drug Administration (FDA) over the past five years were approved without evidence that they improve health outcomes or length of life. (This study closely corroborates and acknowledges the findings published last year by John Fauber of The Milwaukee Journal Sentinel and Elbert Chu of MedPage Today.) Follow-up studies showed that 86 percent of the drugs approved with surrogate endpoints (or measures) and more than half (57%) of the cancer drugs approved by the FDA “have unknown effects on overall survival or fail to show gains in survival.” In other words, the authors write, “most cancer drug approvals have not been shown to, or do not, improve clinically relevant end points.”

The use of surrogate endpoints in the approval process is at the heart of this issue. Drug companies argue that these alternative measures permit smaller, cheaper and faster clinical trials, allowing desperately needed drugs to get to market faster. Demonstrating efficacy with “harder” measures like overall survival – whether someone actually lives longer as a result of the drug – is a higher bar that requires more time and resources.

Many drug company representatives argue that the shortcut is not only acceptable but desirable. A 2011 Genentech white paper on oncology endpoints opens with this headline:

“…such surrogate endpoints as objective response rate and progression-free survival have been employed because they can be reached faster and may offer important benefits in evaluating therapies.”Continue reading…

Disruptive Idiots From Silicon Valley

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Recently, I was dining with elite radiologists. In that uncomfortable silence between dessert and the check, I said “radiology must shift the traditional paradigm by creating value streams using disruptive innovation to leverage population health to build strong ecosystems and a robust ectoplasm.”

I was experimenting if excreted verbiage hastens the check. Instead, it sparked a vigorous conversation about disruptive innovation, compelling me to drink more cognac.

In healthcare, no two words have been as mercilessly cheapened by overuse as “disruptive innovation.” This is a shame. Disruption is serious scholarship by Clayton Christenson who studies the diffusion of technology. Christenson astutely observed that when the technology (disrupter) which renders its predecessor obsolete arrives, it is cheaper and (usually) of lower quality. It is by virtue of its lower quality it can be cheaper, and by virtue of its low cost it appeals to a neglected segment of the market.

Disrupters appeal to our moral sense of social justice. A start-up brings a giant corporation to its knees -how cool is that? It’s like David taking on Goliath (with a little help from venture capitalists).

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The Time-Warp

jonathan bushJohn Gage, Sun Microsystem’s fifth employee and its former chief researcher, famously said “the network is the computer.” The majority of us experience this every day through interactions with a wide variety of highly-intelligent, super-connected networks including Facebook, which remembers our friends’ birthdays better than we do; ATM networks, which know instantly if we have the cash that matches our request; and the complex, yet seemingly simple interweaving of phone networks, which allows us to communicate smartphone-to-smartphone regardless of carrier. Sadly, healthcare struggles to grasp this important concept.

Earlier this month, I flew to Utah for a conference hosted by KLAS, a major healthcare research outfit, about interoperability. Interoperability is a clunky word that’s talked about endlessly in healthcare, but at its root is an important notion: health care information needs to flow freely. Interoperability means that important information isn’t stuck in proprietary enterprise software that a hospital spent millions of dollars buying years ago. Having this information in the right place at the right time equates to reduced risk of medical errors and makes the delivery of health services more efficient and less costly. I’m convinced more than ever the only way to free information from the silos where it’s currently stranded is for the industry to embrace connectedness by switching to cloud-based, open networks.

The goal is clear. Yet healthcare IT executives and those buying their products remain stuck in the old ways of thinking. In their minds, software is still the computer, and sunk costs keep it so. As such, health information is largely trapped on technology islands that are maintained at great expense onsite at hospitals across our country versus flowing across the care continuum via a universally available information network. Just how bad is the data jam? An Epocrates’ survey earlier this year of nearly 3,000 physicians found that only 14 percent of physicians can access usable electronic health information across all care delivery sites and six out of 10 doctors, even when in the same organization, aren’t effectively sharing information.Continue reading…

ONC’s Interoperability Plan: a Day Late and $19bn Short

Screen Shot 2015-10-21 at 8.40.34 AMEarlier this month, the Office of the National Coordinator for Health Information Technology released an update to Connecting Health and Care for the Nation: A Shared Nationwide Interoperability Roadmap. The roadmap was first announced back in January, and the changes shared this month aren’t significant.

Ultimately, it calls for all healthcare providers nationwide to be able to send and receive electronic clinical information by the end of 2017.

This is a good plan on the surface, although it comes six years and millions of dollars late, and like other programs it may be more cumbersome that it first seems. Essentially, there are three facets:

1) Data standards to format and request/receive data

2) Incentives (again!)

3) Governance

Despite the intention to move data across the Union, each state will have the right to create its own unique rules on how to manage the exchange of information. This is a problem as we have seen before in the simple Case of e-prescription routing. A few states make it almost impossible to send e-scripts and layer on their own special form of bureaucracy. This inhibits the ultimate goal of reducing costs and errors and increasing Efficiency at the expense of both providers and patients.

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