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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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Instadoc!

I grew up in Rochester, NY. Statistically, this means that I probably had a family member who worked at Eastman Kodak, as the company employed over 62,000 people in Rochester at it’s peak. I did, in fact, have two: my father and my brother-in-law. My brother and I both worked there during two fun and profitable summers of our college years in the delightful “roll coating” division. It actually paid quite well, but was miserable work.

Kodak was, at one point, the consummate American success story, dominating its market like few others. In 1976, it had a 90% market share of film, as well as 80% of cameras sold in the US. Kodak Park, the property at the center of manufacturing once employed 29,000 employees, with its own fire company, rail system, water treatment plant, and continuously staffed medical facility.

Fast-forward to 2012, and the picture changes dramatically. In a single year, Kodak declared chapter 11 bankruptcy, received a warning from the New York Stock Exchange that its stock was below $1/share for long enough that it was at risk of being delisted, announced it is no longer making digital cameras so as to focus on its core business: printing, and then a few weeks ago announced it was no longer making inkjet printers. The job force in Rochester alone has gone down by nearly 90%, to an estimated 7200 employees. (All of this info came from Wikipedia, if you wondered).

Adding pain for former Kodak fans was the announcement in April of this year that Facebook was buying the photo sharing company Instagram (which employed 13 people at the time) for an estimated $1 Billion.

So how could a company so dominant be overcome by one with only 13 employees? Didn’t the resources of Kodak give them anything better to sell than this small start-up? And what spelled the doom of a well-proven system of photography that fueled one of the most successful companies of its time? Was it acts of congress? Was it passage of a photography reform bill, or Obamachrome? Was it formation of ACO’s (accountable camera organizations), the use of the photographic centered media home, or the willingness of the government to pay photographers over $40,000 if they prove they use digital cameras in a “meaningful” way?

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What Exactly Is Health 2.0?

Pascal Lardier, Director, International Events of Health 2.0, answers questions about the co-production of health by patients and physicians today and in the future.

Health 2.0. What exactly does this quite a new word describe? When did you use that word for the first time?

Pascal Lardier: It is a quite a new word indeed. Our first conference was in 2007 in San Francisco and at the time some people called the movement a fad. Since then our organization Health 2.0 has introduced over 500 technology companies to the world stage, hosted more than 9,000 attendees at our conferences and code-a-thons around the world, awarded more than $1,400,000 in prizes through our developer challenge program and inspired the formation of 46 new chapters in cities around the globe! The movement was obviously far from being a fad. Just like web 2.0 was a new version of the web, Health 2.0 describes a new era for health innovation where stakeholders collaborate, patients are empowered and the production of health becomes participatory.

Many people associate the word with social media and related things such as blogs, health platforms and health websites. Is that correct? How does “Health 2.0” differ from “e-Health” or “ICT”, for example?

PL: Communities such as online patient forums and the associated produced content played an important role in the Health 2.0 movement from the start. But it’s not just about social media and communities anymore: it’s also about patient-physician communication, personalized medicine, population health management, wellness, sensors/devices/unplatforms, data, analytics, system reform and more. In the beginning, health content became participatory. It is now becoming more and more personalized. All these profound transformations were calling for a new name and Health 2.0 was a good candidate for describing the extension of eHealth.

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A Time for Boundless Energy and Optimism

2012 has been a challenging year for me.

On the personal side, my wife had cancer. Together we moved two households, relocated her studio, and closed her gallery. This week my mother broke her hip in Los Angeles and I’m writing from her hospital room as we finalize her discharge and home care plan before I fly back to Boston.

On the business side, the IT community around me has worked hard on Meaningful Use Stage 2, the Massachusetts State Health Information Exchange, improvements in data security, groundbreaking new applications, and complex projects like ICD10 with enormous scope.

We did all this with boundless energy and optimism, knowing that every day we’re creating a foundation that will improve the future for our country, communities, and families.

My personal life has never been better – Kathy’s cancer is in remission, our farm is thriving, and our daughter is maturing into a fine young woman at Tufts University.

My business life has never been better – Meaningful Use Stage 2 provides new rigorous standards for content/vocabulary/transport at a time when EHR use has doubled since 2008, the State HIE goes live in one week, and BIDMC was voted the number #1 IT organization the country.

It’s clear that many have discounted the amazing accomplishments that we’ve all made, overcoming technology and political barriers with questions such as “how can we?” and “why not?” rather than “why is it taking so long?” They would rather pursue their own goals – be they election year politics, academic recognition, or readership traffic on a website.

As many have seen, this letter from the Ways and Means Committee makes comments about standards that clearly have no other purpose than election year politics. These House members are very smart people and I have great respect for their staff. I’m happy to walk them through the Standards and Certification Regulations (MU stage 1 and stage 2) so they understand that the majority of their letter is simply not true – it ignores the work of hundreds of people over thousands of hours to close the standards gaps via open, transparent, and bipartisan harmonization in both the Bush and Obama administrations.

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Private Insurance Exchanges––Will They Save Money? Will the Idea Grow?

Private health insurance exchanges will save employers money but not make health insurance cheaper.

Because private health insurance will save employers money, they will grow.

Will Private Insurance Exchanges Reduce Health Insurance Costs?

There’s lots of buzz these days about private insurance exchanges. The idea is to give employees more choice in purchasing their own individual coverage from a big menu of insurance companies and plan alternatives, and as a result, create more robust competition and thereby help control costs.

But I think private insurance exchanges will have just the opposite effect on the price of large employer health insurance plans.

First, private insurance exchanges will increase the insurance program expense factor for any large employer plan using them. A large self-insured plan may operate on an expense factor in single digits (maybe 90% of premiums go for claims and 10% of premiums for insurance company overhead). Individual products operate on an expense factor of as much as 20% and small group plans as much as 15%. Moving away from self-insurance and to an individual choice platform will increase the expense factor leaving the employee less money for benefits.

Second, employers currently save a lot of money in a self-insured plan because self-insurance gives the employer more flexibility. For example, a self-insured plan doesn’t have to comply with state benefit mandates. There is widespread agreement that self-insurance flexibility saves employers lots of money and that is why almost 100% of large employers do it. That savings would end, or be reduced, if the employer eliminated its self-insured plan and instead offered a much more complex individual choice platform in an insurance exchange, leaving less money for benefits.

Proponents of private insurance exchanges argue that by pitting many health plans against each other and giving employees these choices we will have a more robust market which will drive health insurance prices down. But it’s dog eat dog out there now in the group health insurance business. Ask a business owner or benefits manager how they market their health insurance and they will tell you they have their consultant or broker regularly get bids from a number of insurers to improve their plan. Most small employers do it every year.

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Health 2.0 Code-a-thon – SF Winners

The San Francisco teams only had 2 days to create a solution and 3 minutes to present. It was a high-stakes, high-pressure event. If known the challenges it was entered for are in parentheses. AT&T, Aetna, Healthline, Food Essentials and athenhealth all offered separate challenges and prizes for this codeathon.

DIG*IT Mobile (AT&T): This app tried to use the “desire engine” concept to develop a medication adherence app specifically for patients with HIV. The app includes a news feed, a way to compare yourself to other people like you, easy contact buttons for providers and a quick health summary. Patients can see a graph of their lab values and their medication compliance, as well as a graph for adherence. Each day the app asks if a patient has taken their medication, as well as providing alerts that tell them to take their meds. The med component showed their pills and when their prescriptions are due. They plan to incorporate crowd-sourcing information later.

DocSays (Aetna & Healthline): This team took on the challenge of improving hospital discharge outcomes. Patients are overloaded with information at the time of discharge. Their app, titled Doc Says, gives them automatic reminders about everything from activity levels, foods, medication to reminders for appointments. It can also work on an SMS system, so it doesn’t have to be smart-phone based. Options on the screen include defining all doctors instructions as tasks. The steps are broken down so that “pick up your lisinopril” is a separate task from the more generic “take your medicine.”

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