Open Health Data Ain't Free

A major medical association has released data on the performance of heart surgeons, in what bloggers are calling the "open health data movement," in reference to the Obama administration's open government initiative. The president's program involves releasing metrics detailing the inner workings of government via public websites. The Society of Thoracic Surgeons' effort involves releasing scores of more than 90 percent of the roughly 1,000 U.S. cardiac surgery practices to the public via a Consumer Reports subscription website.

Money is required to view the findings, but the New England Journal of Medicine revealed some of the results in a recent editorial:

"The move on the part of the STS to make results available to the public will certainly trigger a cascade of responses. Advocates of transparency will point to the shortcomings of the ratings -- the voluntary and therefore selective participation of programs (50 of the programs that have chosen to report their data have received three stars, whereas only 5 have received one star), the lack of long-term outcomes (e.g., 10-year survival, graft patency, and functional improvement), and the lack of physician-specific ratings. Expect such advocates to push for more. Nonparticipating cardiac surgery programs will come under pressure to allow the outcomes in their programs to be reported. Physicians in other surgical specialties that are amenable to this type of approach, such as orthopedics or vascular surgery, may be expected to follow suit. And this event will fuel the debate regarding the risks and benefits of public reporting, including the question of whether it assists patients in discriminating among sites of care."

The writers over at e-patients.net, a community that advocates for consumer involvement in the treatment process, had this to say:

"Open Health Data is Here. Welcome To The Great Data Divide!. . .

If that data divide really happens, the empowered will have access to the life-saving dataset and will act upon it, while many of the people suffering from chronic diseases (the same population that would benefit most from access to this information) won't. Over time it is therefore probable that the 3 stars outliers, the centers of excellence, will treat an ever growing number of empowered while the 1 star outliers, the centers with high mortality, will get worse and worse result, simply because they will treat an ever growing number of digital outliers who haven't the possibility to obtain health information/data and apply filters.

I believe the Open Data movement, particularly as it applies to health, is an important, highly transformative and positive development. For some! What do you think? What should be done?"