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The Lifesaving(?) Technology of Facebook

When most of us think about Facebook, the first phrase that comes to mind probably isn’t “good Samaritan.”  Facebook is an easy way to keep in touch with friends, and it can be a gigantic time-suck, for sure, but last week the site did something that could truly benefit a lot of people. On May 1, Facebook launched an initiative to encourage users to become organ donors, and within 24 hours there had been a spike in the number of people volunteering their body parts for the good of others.

California’s registry saw almost two months’ worth of people sign up within the first day after the Facebook put up the feature.

Organ transplantation is one of the miracles of modern medicine, but there simply aren’t enough organs to go around for all the patients who need them. According to the United Network for Organ Sharing (UNOS), there are 72,900 people on active lists waiting for an organ. Compare that number to the 2,263 transplants that took place between January 2011 – 2012. Last year, more than 6,000 people died waiting for an organ.Obviously, increasing the number of organ donors could have a huge impact on the number of transplants – and on the lives of thousands of people.

Why don’t more people become donors? Some object on religious grounds, but the biggest obstacle is inertia. Most of us who sign up to be organ donors (I’m one of them) do so when we renew our driver’s license, by checking a box on a form saying we want to donate our organs. If you don’t mark the form, it’s assumed you don’t want to donate. Most people only encounter this choice every few years, when their driver’s license is up for renewal, and it’s hard to think about such a decision while standing at a Department of Motor Vehicles counter.

Some countries, such as Spain, Australia and Germany, have opt-out systems. It’s assumed that you are willing to donate unless you’ve said you prefer not to. Rates of donation in those countries are sometimes higher than in the US, although some presumed-consent countries have much lower rates. (Factors other than the number of donors, like the availability of surgical facilities and transplant surgeons, can affect the number of actual transplants in different countries.)

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Red or Blue Pill for Payment Reform? Both Won’t Work

Are the House and Senate giving us a false choice for how to control health care costs in Massachusetts? Aren’t there other options?

A few major themes have emerged from the two payment reform proposals and highlight the fact that they fail to align incentives for patients to be more involved in the purchase of their health insurance and their health care.

For example, even with full transparency of cost and quality (which is a huge lift on its own) for many patients, high-cost still correlates with higher quality in medicine. A recent report from Attorney General Coakley proved this theory wrong, but simply providing patients with cost data without placing the right incentives in their health plan to choose the low-cost high-quality provider will result in many selecting the most expensive care. As a result, these proposals will fall short of sustainably bending the cost curve.

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Activist Seeds – The Latest, Subtle Trend in Seed Investing

When I entered the VC business 10 years ago, I tried to keep thinking about venture capital as a business, where the key focus area was on meeting the needs of our target customers — entrepreneurs and limited partner investors.

In the case of entrepreneurs, those needs have changed radically in these last 10 years.  The surge in seed investing over the last few years has been well-reported and analyzed.  With advances in cloud computing, open source infrastructure, development tools and general “Lean Start-Up” techniques, entrepreneurs need less capital than ever before.  And when entrepreneurs’ needs change (i.e., requiring less capital), smart investors adjust to meet those new needs.  Hence, the rise of angels, super-angels, incubators, accelerators, micro-VCs and VC-led seed programs.

But as the “Great Seed Experiment” (as my partner, Michael Greeley, calls it) matures, a new trend is emerging.  Entrepreneurs are beginning to learn the difference between what I’ll call Passive Seeds and Activist Seeds.  And entrepreneurs are learning that the difference between the two, although somewhat subtle, matters greatly.

Passive Seeds are when a VC invests a small amount of money (for a $200-500M mid-sized fund, typically $250k or less, for a large $1B fund, perhaps $500k or less), to achieve a very small amount of ownership (typically less than 5%) to simply create an option to participate as a more meaningful investor in the future.  Passive seed programs get most of the press attention because of their sheer volume.

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Fast Science: The Uncertainty Paradox

Reading Barbara Ehrenreich’s “Bright-Sided” has been liberating in that is has given me permission to let my pessimistic nature out of the closet.

Well, it’s not exactly that I am pessimistic, but certainly I am not given over to brightness and cheer all the time. My poison is worry. Yes, I am a worrier, in case you had not noticed. So, imagine how satisfying it is for me to find new things to worry about. As if climate change were not enough, lately I started to worry about science.

No, my anxiety about how we do clinical science overall is not new; this blog is overrun with it. However, the new branch of that anxiety relates to something I have termed “fast science.” Like fast food it fills us up, but the calories are at best empty and at worst detrimental. What I mean is that science is a process more than it is a result, and this process cannot and should not be microwaved. Don’t believe me? Let me give you a couple of instances where slow science may be the answer to our woes.

1. Lies and damned lies

Remember this story in the Atlantic that rattled us with its incendiary message? Researcher John Ioannidis has been making headlines with his assertion that most, if not all, of what we know in medicine is in doubt, given how we do and publish research. And how we do and publish research has everything to do with the speed of “progress.” Academic careers are made with positive results, to sell news the media demand positive results, and to respond to this demand academic journals prefer only to publish positive results (this last phenomenon is referred to as “publication bias,” and is something Ben Goldacre rails against at length). A further manifestation of this fast science is that “no replicators need apply.” I am, of course, referring to an extension of the publications bias, whereby journals are not interested in publishing even a positive study that replicates a previous finding — this is simply not sexy. Thus, results have to be quick and positive to grab a share of our attention and sell academic prestige, journals and news.Continue reading…

Don’t Bypass Physicians

As physicians, our primary concern is ensuring the health and safety of our patients. The Food and Drug Administration has offered a new concept to make more prescription drugs available over the counter (OTC). Proponents claim it could improve patient health and outcomes, reduce patient costs and promote proper medication use. We are skeptical that it would achieve any of these goals.

The American Medical Association is concerned about patients taking certain drugs without physician involvement — especially patients with chronic diseases. No evidence has been offered that the innovative technologies underpinning this concept would actually allow patients with high blood pressure, high cholesterol, asthma or migraine headaches to self-diagnose and manage these serious chronic medical conditions safely on their own.

As a chronic condition evolves, treatment changes are often needed from a physician. Without physician involvement, patients might take the wrong medication or dose for their needs, potentially causing harm. Self-diagnosis and treatment conflict with the care coordination and disease management that new health care payment and delivery models are trying to achieve.

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Making Privacy Policies Not Suck

Privacy policies are long legalese documents that obfuscate meaning. Nobody reads them because they are indecipherable and obtuse. Yet, these are the documents that tell you what’s going on with your data — how, when, and by whom your information will used. To put it another way, the privacy policy lets you know if some company can make money from information (like selling you email to a spammer).

Creative Commons did an amazing thing for copyright law. It made it understandable.

Creative commons reduced the complexity of letting others use your work with a set of combinable, modular icons.

In order for privacy policies to have meaning for actual people, we need to follow in Creative Commons footsteps. We need to reduce the complexity of privacy policies to an indicator scannable in seconds. At the same time, we need a visual language for delving deeper into how our data is used—a set of icons may not be enough to paint the rich picture of where you data is going.

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DSM 5 Finally Begins Its Belated and Necessary Retreat

Sigh of relief. The DSM 5 website announced recently that two of its most controversial proposals have finally been dropped. We have dodged bullets on Psychosis Risk and Mixed Anxiety Depression. Both are now definitively rejected as official DSM 5 diagnoses and instead are being exiled to the appendix. And one other piece of good news-the criteria set for Attention Deficit/Hyperactivity Disorder has been tightened (not enough, but every little bit helps).

The world is a safer place now that ‘Psychosis Risk’ will not be in DSM 5. Its rejection saves our kids from the risk of unnecessary exposure to antipsychotic drugs (with their side effects of obesity, diabetes, cardiovascular problems, and shortened life expectancy). ‘Psychosis Risk’ was the single worst DSM 5 proposal—we should all be grateful that DSM 5 has finally come to its senses in dropping it.

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Even Aetna CEO Admits: We’re Toast

I’ve been saying it for years (and in 3D and Technicolor in my new book Healthcare Beyond Reform): The Standard Model of Healthcare (the traditional unmodified fee-for-service, commodified, defined-benefit payment system) is broken and doomed. It’s fascinating to hear that even the CEO of Aetna, Mark Bertolini, said exactly that recently at a major healthcare technology conference — and that Forbes, a bastion of business and the private approach to everything, would publish an article on his remarks.

At Health 2.0 last fall, Bertolini said that he no longer thinks of Aetna as an insurance company, but primarily as an information company. This time, he made these main points:

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Drug Data Shouldn’t Be Secret

In the fall of 2009, at the height of fears over swine flu, our research group discovered that a majority of clinical trial data for the anti-influenza drug Tamiflu ― data that proved, according to its manufacturer, that the drug reduced the risk of hospitalization, serious complications and transmission ― were missing, unpublished and inaccessible to the research community. From what we could tell from the limited clinical data that had been published in medical journals, the country’s most widely used and heavily stockpiled influenza drug appeared no more effective than aspirin.

After we published this finding in the British Medical Journal at the end of that year, Tamiflu’s manufacturer, Roche, announced that it would release internal reports to back up its claims that the drug was effective in reducing the complications of influenza. Roche promised access to data from 10 clinical trials, 8 of which had not been published a decade after completion, representing more than 4,000 patients from every continent except Antarctica. Independent verification of the data seemed imminent. But more than two years later, and despite repeated requests, we have yet to receive even a single full trial report. Instead, the manufacturer released portions of the reports, most likely a very small percentage of the total pages. (One of us, Tom Jefferson, has been retained as an expert witness in a lawsuit relating to some of these issues.)

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Slow Medicine

I can’t tell you exactly when it happened, but sometime in the past two decades, the practice of medicine was insidiously morphed into the delivery of health care. If you aren’t sure of the difference between the two, then “God’s Hotel” is the book for you. It’s an engaging book that chronicles this fin-de-siecle phenomenon from the perspective of San Francisco’s Laguna Honda Hospital, the last almshouse in the United States.

Dr. Victoria Sweet, a general internist, came to Laguna Honda for a two-month stint more than 20 years ago and ended up staying. Laguna Honda was home to the patients who had nowhere else to go, who were too sick, too poor, too disenfranchised to make it on their own. The vast open wards housed more than a thousand patients, some for years. Laguna Honda was off the grid, and this, Sweet discovered, was to the benefit of the patients.

Unencumbered by HMOs and insurance companies, the doctors and nurses practiced a very old-fashioned type of medicine, “slow medicine,” as Sweet terms it. There was ample time for doctors and nurses to get to know their patients, and ample time for patients to convalesce. Many a written-off patient recovered within the comforting, unhurried arms of Laguna Honda.

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