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The Future of Health Is in #Opendata

This Saturday I had the pleasure of helping organize a hackathon that was put together by the Open State Foundation (HackDeOverheid). The theme was “Open Data, open for business” and took place at a very unique place in Rotterdam – WORM (an institute for avant garde recreation). It was a perfect spot to gather almost 150 people from all disciplines and sponsors/partners ranging from the Hogeschool Rotterdam, TNO, Internet Valley Rotterdam to name a few, but also a contribution from Health 2.0.

Open health data is relatively a new initiative within the Open State Foundation with a simple but strong message:

“Open Zorg Data is an initiative to build a community that utilizes open healthcare data, encourages innovation & entrepreneurship, improves transparency in our healthcare system and most importantly turns healthcare into health for our digital citizens”

In the last few weeks, we worked with the Ministry of Health (Ministerie van VWS) to plan out the OpenZorgData Workshop and help inspire the community of developers to use the data for social and entrepreneurial good.

The turn out was great!!  We have more then doubled (2X) the number of attendees to the workshop from the previous workshop that took place in Amsterdam. First up in the morning data pitch session was, Ron Roozendaal (CIO of the Ministry of Health), who took a few minutes to introduce all the stakeholders within the Ministry and the newly opened data sets. He exuded enthusiasm and excitement!

Our workshop kicked off at 11:45 with standing room only, but when I asked how many people were hackers planning to use the open health data, only one guy raised his hand (but noted that he had no plans of doing it that day). Here we are: room full of people, Ministry of Health in the room and not one single individual was planning to hack away at the data. We carried on with the presentations where Lany Slobbe, Hans Loonen & Christian Gonzales presented their respective data sets. The workshop presentations finished off with Seth van den Bossche from TNO presenting their open data & Atilla Erdodi showcasing an open API he put on top of the KiesBeter data (opened up back in June of 2012).

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Outlawing Templated Notes in the Electronic Health Record

It was just a matter of time until this would happen.

Buried in the middle of this New York Times article on The Ups and Downs of Electronic Medical Records is the observation that a Medicare administrative contractor dubbed National Government Services has announced that it, on behalf of CMS, will “deny payment” for medical services that are documented in an electronic health record (EHR) using “cloned documentation.”

The topic was covered more than 2 years ago. “Cloned documentation” is the widespread practice of copying, pasting past documentation in an EHR into the current encounter record to inflate the recorded patient evaluation to primarily justify a higher payment. Thanks to this OIG report, the Feds have figured out that the true value proposition for an EHR is not “meaningful use” but wasteful abuse.

In addition to congratulating the Times for their crack cutting-edge reporting, here is a prediction…

1. The mere threat of payment denials and the possibility of sanctions will prompt health administrators everywhere to announce at medical staff meetings that “cloned” notes are verboten.

2. Until the “templated note” functionality is deleted in future EHR software updates, physicians will respond to this latest edict from their administrators in the traditional manner: they’ll ignore it.

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Hey, Known Spender!

The most remarkable thing about Health 2.0 this time around, at least for me? The growing number, and percentage, of attendees old enough to get a reference like “Hey, Known Spender.”

If that wordplay evokes the trumpet blare of the brass band that accompanied one of the more pernicious and offensive TV ad campaigns of the 1970s (derived from the 1966 musical Sweet Charity), then you would have had more company than usual at last week’s 2.0 conference in San Francisco.

For all you Gen X’ers, Y’ers, and Millennials pitching your ever more nifty wares this time around: those horrific ads featured a slinky woman – made-over from the ‘60s musical’s stripper chorus to a ‘70s “empowered” glamour-gal – crawling all over some dude in a tux and singing “Hey, Big Spender, spend a little time with me.” The ads were unambiguous proof that American culture’s direct equation of cash and sex pre-dated the 1980s.

The “Known Spenders” who spent a little time at Health 2.0 this year were, for the most part, old enough to remember that ad. And they are actually make a living today working in corporate health care jobs. They’re the people they call “The Suits” in Hollywood, and they can actually get your products out of beta and into the real world. The slow steady creep of relevance not just of Health 2.0 as a marker of the market, but of the entire dream of consumer health IT, can be measured by the slow steady influx of the salt-and-pepper folks my own age who work for health insurance companies, employer groups, hospital systems, and drug companies. Six years ago, at the inaugural 2.0, The Suits were nowhere in sight. This year, they were everywhere you looked, kicking tires and taking business cards. Skepticism was abundant among those I talked with, as it should be with industry lifers who have endured two full cycles of health IT hype. (Healtheon and Revolution Health were the market toppers of valuation, grandiosity, and absurdity; if the current boom goes bust, we lifers know exactly who it will be.)

Among the two dozen or so people I’ve known over the years and who have yet to be paroled from health care, the consensus at 2.0 was “these are mostly good products, not companies, there is too much overlap, they have too narrow a scope of functionality, and many need to be rolled up. But a few actually have replacement revenue potential.”

As for the first part of that consensus, nothing new here. Nor anything new about the classic chicken-and-revenue problem that has hampered Health 2.0 start-ups from the start. I’m hardly the first, and surely won’t be the last, to point out the obvious: health care is not lacking for great consumer information products, services, systems, or apps; those products etc. are lacking users, adoption, exposure, traffic, critical mass, revenue. By “revenue” I mean “cash,” from paying customers, not promises, sales pipelines, booked revenue, or even signed contracts with guarantees. And I certainly don’t mean investors’ cash. I’m talking about revenue from consumers, patients, providers, or any of the myriad third parties who are spending money today – just not happily.

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Digital Health: Almost a Real, Live Business

While the evolution of the digital health ecosystem has seemed at times almost painfully contrived, it now appears to have reached the point where it requires but a few sprinkles of magic fairy dust to be truly alive.

The basic idea behind digital health is pretty clear: we can (and must) do health better, and technology should be able to help,

There’s also an ever-increasing amount of support for early-stage innovators in this space. A remarkably large number of digital health incubators have sprung up around the country, as Lisa Suennen captured with characteristic verve in a recent Venture Valkyrie post.

On top of this, a slew of corporate VCs have now emerged – many from payors, but some from communication companies, and even a few from big pharmas such as Merck – all keen to invest strategically in the digital health space.

Deliberately, many of these large corporations also represent likely buyers for the products or services that will be produced, so it really does seem like an example of the savvy external sourcing of innovation.

So we’re good, then – right?

Well, not so fast.

It turns out that many high profile VCs continue to eschew this space, other than perhaps an occasional investment or two. The reason? As one extremely well-regarded VC – with extensive healthcare experience – told me yesterday, “I haven’t seen a viable business model yet.”

Translation: how do you make (serious) money here? Where’s the revenue?

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United Healthcare Expands to Brazil

UnitedHealth Group is set to become the controlling owner of the largest healthcare company in Brazil, a country whose health market is rapidly growing, in one of the most high-priced overseas deals by a U.S. private insurance company.

The largest American insurer is spending $4.9 billion to acquire 90 percent of Brazil’s Amil Participacoes, which has about 5 million members, a provider network of 3,300 hospitals and 44,000 doctors, and also owns 22 hospitals and about 50 clinics, reported the Associated Press.

By entering the Brazilian healthcare market, UnitedHealth can better access the country’s 200 million population, only 25 percent of which has private insurance, at a time when Brazilian leaders increasingly are turning to private companies to insure its citizens, Reuters reported.

“Brazil has emerged as a consistently growing and evolving market for private sector health benefits and services. Its growing economy, emerging middle class and progressive policies toward managed care make it a high potential growth market,” UnitedHealth CEO Stephen Hemsley said Monday in a statement.

“Combining Amil, the clear market leader serving an under-penetrated market of nearly 200 million people, with UnitedHealth Group’s experiences and capabilities developed over the last three decades is the most compelling growth and value creation opportunity we have seen in years,” he said.

Amil’s founder Edson Bueno and his partner Dulce Pugliese will retain their 10 percent ownership of Amil for at least five years. Amil also will invest about $470 million in UnitedHealth Group shares, which it also will hold for five years, according to the Minneapolis Star-Tribune.

First, Do Net Harm?

Recently, the US Preventative Services Task Force reiterated its recommendation that women not undergo routine screening for ovarian cancer. This was remarkable, not simply because it was a recommendation against screening, but because the task force was making the recommendation again, and this time even stronger.

The motivation for the recommendation was simple: a review of years’ worth of data indicates that most women are more likely to suffer harm because of false alarms than they are to benefit from early detection. These screenings are a hallmark of population medicine—an archetypal form of medicine that does not attempt to distinguish one individual from another. Moving beyond the ritualistic screening procedures could help reduce the toll of at least $765 billion of wasted health care costs per year.

We already know the common changes in the DNA sequence that identify people who have higher risk of developing ovarian, breast or prostate cancer and most other types of cancer. Consumers can now readily obtain this information via personal genomic companies like 23andMe or Pathway Genomics. But we need to do much more DNA sequencing to find the less common yet even more important variations—those which carry the highest risk of a particular cancer. Such research would be easy to accomplish if it were given top priority and it would likely lead to precision screening. Only a small fraction of individuals would need to have any medical screening. What’s more, it will protect hundreds of thousands of Americans from being unnecessarily harmed each year.

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The Mystery Data Set

In a few days, I will be releasing the most controversial healthcare project I have ever worked on. But you do not need to take my word for it.  I will be releasing a completely new healthcare data set. That data set, which will remain a “Mystery Data Set” until its release to the healthcare data scientists attending Strata RX, should completely revolutionize the way we think about healthcare delivery in the United States.

This mystery data set is the first real outcome of the Patient Skunkworks project. Patient Skunkworks is a new way for me to try and create high-impact but low-profit software projects. This is part of a new Not Only For Profit software development model that I have been working on. The new company forming to do this work will be called Not Only Development.

I will be releasing this data during the last keynote on the first morning (Oct 16) of the 2012 Strata RX conference. There is simply no way, in a single keynote, to even begin understanding all of the ways that this data set will be leveraged to improve healthcare. More importantly, there is really no way to adequately explain why I would choose to give away such a valuable and dangerous data set.

To help people digest the implications of this data set, I will be writing two articles about the data set. This one, before the release which helps to explain the underlying motivation behind the release, and another one after the release explaining what the data set is, and how I think it can be leveraged.

I am releasing this dataset because I believe that the only way to solve the problems in healthcare is to embrace a radical openness with health data. Healthcare data, with the exception of patient identity data, belongs in the open, in the sunlight. When used correctly, I believe that healthcare data should make patients feel empowered, and everyone else in the healthcare industry uncomfortable. I believe that patients deserve deep, dangerous and real access to data. I think when we start talking about how data might actually be dangerous for patients, its just a sign that we are “doing it right”. I call this concept Radical Access to Data (and yes, that recursively spells “RAD”).

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Don’t Confuse Hard Science With Bad Pharma

A key lesson of science is the importance of a control group; I worry that a lot of coverage and discussion of the biopharma industry (in which I work) neglects this lesson, and instead contrasts (implicitly or explicitly) industry behavior to that of an imagined, idealized standard of perfection, and fails to place the actions in the context of medical science as a whole.

I appreciate critical coverage of the industry: reporters should always maintain high standards, approach new information skeptically, and not take anything at face value.

However, what disappoints me is the common, implicit assumption that industry science deserves to be treated as a special case, rather than considered within the broader framework of contemporary research.  I’m especially disappointed by the frequent assumption that the behavior of industry scientists should be viewed more skeptically than the behavior of academic scientists; this strikes me as a magical, often self-serving belief that has now become elevated to the status of conventional wisdom.

Take data sharing, a topic in the news today (and discussed very thoughtfully here by John Wilbanks, the guru of open science).  While most media coverage of this topic (both today and over the years) has focused on the transparency of industry research, I’ve been attending the annual Sage Commons Congress since its inception in 2010 (disclosure: I served as a founding advisor to Sage, a non-profit organization focused on open science, founded by Eric Schadt and Stephen Friend), and hearing every year about how incredibly difficult it is to get academic groups to share with each other, for a wide variety of reasons.  (See this exceptional talk from Josh Sommer of the Chordoma Foundation at the First Sage Congress).  Getting scientists (or any group of competitive human beings) to exchange data turns out to be a real problem — especially in the highly-regulated environment in which clinical data sit.

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Health IT and Dad

Health information technology has, in many ways, been a calling for me. I passionately believe in the ability of technology and information to reduce costs, improve quality and transform healthcare. For the last seven years (I won’t say the “better part” as my wife and kids would probably not appreciate that characterization…on the other hand, they would quickly confirm that it has consumed most of my waking hours), I have collaborated with hundreds organizations in healthcare and technology across the public sector and the private sector to try and positively influence the adoption and use of health information technology. By many measures, this work has been successful.

Awareness levels and perceived value of health IT among doctors, hospitals, policymakers and many other audiences has improved dramatically. A wide majority of physicians in the U.S. have by now adopted technologies such as electronic health records and e-prescribing. Playing a small part in this progress to date has been the most gratifying work of my career.

But then came Dad and his own personal experience with health IT. My father’s experience as a patient has left me questioning the level of progress that has been achieved.

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Risks and the Benefits: What Health Policy Can Learn from Clinical Medicine

A few months back, we admitted a patient we’ll call Mr. Jones to the hospital for a severe gastrointestinal bleed.  We had discharged him two weeks earlier after he had come in with a heart attack and made sure he was on aspirin to prevent future cardiac events.  He dutifully took his aspirin and on the day of the readmission, had a massive bleed.  He made it to the hospital barely alive and an endoscopy in the ICU showed an active bleeding gastric ulcer.  For Mr. Jones, the gastrointestinal bleed, likely brought on by the aspirin, was an “unintended consequence” that almost killed him. Yet no one questioned whether we should have given him aspirin in the first place.  I felt terrible about what had happened but found solace in knowing that while for some patients the risks of aspirin are worse than the benefits, for the general population of people like Mr. Jones, the benefits are clearly worth the side-effects.

We do risk-benefit analyses every day in clinical care, knowing that for some patients, the benefits will be outweighed by the harm.  We try to be thoughtful about who might be hurt or not, but most of the time, we just can’t predict.  So, when the benefits appear to outweigh the risks, we move forward and try to learn from cases like Mr. Jones.

While this kind of risk-benefit analysis is common in clinical practice, it’s unfortunately not how we discuss health policy interventions.  No policy intervention is ever without risks, and it is rare that a new policy will have no side-effects at all.  Yet, every time policymakers put in a new initiative, they sell it as a panacea. Critics, upon finding an unintended consequence, then declare the whole thing a failure.

An excellent example of this is health information technology, a topic that I have blogged about in the past.  Proponents only talk about its benefits, allowing critics to highlight every shortcoming and failure.  Thank goodness I don’t have to deal with proponents and critics like that every time I consider prescribing aspirin to my patients.

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