Monday, August 16, 2010

The Open-Source Revolution Comes to Serious Medicine

On Friday, The New York Times' intrepid health-beat reporter, Gina Kolata, took note of a new and promising trend in healthcare research: open-source collaboration, involving some of the biggest names in medical research and medical philanthropy--and, of course, involving all of us.  As Kolata put it:

In 2003, a group of scientists and executives from the National Institutes of Health, the Food and Drug Administration, the drug and medical-imaging industries, universities and nonprofit groups joined in a project that experts say had no precedent: a collaborative effort to find the biological markers that show the progression ofAlzheimer’s disease in the human brain.

Now, the effort is bearing fruit with a wealth of recent scientific papers on the early diagnosis of Alzheimer’s using methods like PET scans and tests of spinal fluid. More than 100 studies are under way to test drugs that might slow or stop the disease.

And the collaboration is already serving as a model for similar efforts against Parkinson’s disease. A $40 million project to look for biomarkers for Parkinson’s, sponsored by the Michael J. Fox Foundation, plans to enroll 600 study subjects in the United States and Europe.

The work on Alzheimer’s “is the precedent,” said Holly Barkhymer, a spokeswoman for the foundation. “We’re really excited.”

The key to the Alzheimer’s project was an agreement as ambitious as its goal: not just to raise money, not just to do research on a vast scale, but also to share all the data, making every single finding public immediately, available to anyone with a computer anywhere in the world.

No one would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort.

Today, Dana Blankenhorn, writing for, further translates this new collaboration into geekspeak, which is good, because it's computer types who will have to be at the spearhead of this effort, right alongside medical researchers:

We think of open source as being a process for developing software. It’s also a process for developing cures. . . . Open source developed in software as an outgrowth of the Internet, as people realized that collaboration could be done cheaply and could create projects no one company could fund on its own. That same idea has now come to medicine, it’s being proven to work, and I predict it will soon sweep the sciences.  Open source is not just for software any more.

Here at SMS, we observed this same techno-trend back in June, taking note of Google co-founder Sergei Brin's efforts to use open-source methods to cure Parkinson's.

What's so interesting about this story, and these developments, is that politicians seem so little interested. Plenty of government officials are closely involved in this effort, most notably at the National Institute on Aging--which put in $41 million--but there are no elected officials seem to be involved.  Strictly speaking, it's not necessary for politicians be so involved--if the system is working, let it work--but as a general rule, politicians like to be associated with good things, including ribbon-cuttings, awards ceremonies, and the announcement of breakthroughs.  And in the long run, that's healthy, because some of the value that politicians bring to the process is the sense of public stakeholdership.

And of course, there's also the issue of shining a public spotlight--"a grateful nation"--on meritorious behavior.  As John Locke observed in 1678:

The principle spring from which the actions of men take their rise, the rule they conduct them by, and the end to which they direct them, seems to be credit and reputation, and that which at any rate they avoid is in the greatest part shame and disgrace.

After citing examples, Locke concluded:

He, therefore, that would govern the world well had need consider rather what fashions he makes than what laws, and to bring anything into use, he need only give it reputation.

So it's in the orchestration of credit and reputation that politicians can play their greatest role--a role for the ages.  

So why aren't contemporary politicians interested?  I think Democrats are shying away they fear that mentioning the words "healthcare" or "medicine" in any way will provoke a reaction among voters.  And Republicans might fear, in this tea-partying time, that being associated with anything that the government does could be trouble for them.   So both sides stay away.  That's their loss, but also ours.


  1. “Open-Source Medical Collaboration”
    I like it!
    It’s like Poker, But all the Players know what you are Holding.
    I like this game.
    If they stick to the “Show & Tell” ground rules, it will be wonderful.
    Can't wait until they tell us, "We Won" :-)

  2. The development of XBRL data tags for public company and mutual fund reporting at the SEC was a prototype for government involvement in open source projects. In 2007 and 2008, a brilliant team of attorneys in the SEC's Office of General Counsel did untold hours of legal work that could serve as precedent for future government involvement in the creation of open source standards. Supporting open source can combine the best features of government standard setting with the best features of private initiative. Contemporary politicians of every flavor should look at the SEC work on public company and mutual fund reporting and become interested.

  3. The mixture of open source, the Internet and the political philosophy of John Locke is a powerful set of ingredients.  Of course, our own Constitution may be the greatest example of an open source project, making individual citizens the working code to our continuing democracy and republic.

    Another great philosopher, Jean-Jacques Rousseau wrote lucidly on many topics, including the difference between the sovereign and government.  Perhaps, it is the shining light of our fellow citizens, the sovereign, rather than our politicians, the government, that this meritorious behavior needs.  Credit and reputation are indeed powerful motivators, and as Dick Armey and Matt Kibbe pointed out yesterday in the WSJ, "Decentralization, not top-down hierarchy, is the best way to maximize the contributions of people and their personal knowledge."

    The ultimate in open-sourced serious medicine would be removing the need for "enrolling" in studies and making all potential candidates for such studies transparent, while simultaneously protecting their privacy.  CLOUD, Inc. (Consortium for Local Ownership and Use of Data) is building that future with its work on an Internet language for people that puts the ownership of data back in the hands of its real owners, in this case, patients. Coupled with healthcare’s version of XBRL for tapping this secure data will yield a new role for the ages, an Internet that is about people and not just web pages.

    CLOUD’s vision for ME 1.0 and its impact on the WHO and WHAT of data can be found at