June 15--In medicine, it's one thing to know that a treatment works, but quite another to know whether it's better than alternatives.
How do doctors decide what's best?
If the treatment in question involves a device, it could be relatively easy. The company that makes the device is happy to fund a study to test its device against other options.
But what if the question is how quickly surgery should be done to get the best result after certain spinal injuries? No one benefits but the patient. Who pays for that study?
Frustrated by how hard it is to get money for such studies and what he called the increasing tendency of insurers to resist paying for certain treatments, Alexander R. Vaccaro, a Rothman Institute spine surgeon, last year founded the nonprofit Association for Collaborative Spine Research to raise money and organize studies.
Gathering money has been difficult, Vaccaro said. He has a $200,000 budget -- including the cost of airfare for 160 researchers -- for what he called a bare-bones meeting in Chicago next month.
"You bring people together in a room. That's how it all starts. I have enough money to bring 160 people together twice a year, once in Chicago and once someplace else. It may be Chicago both times because it's so centrally located. That's all the money I have," said Vaccaro, also a professor at Thomas Jefferson University in Center City.
Vaccaro was involved in an informal research group for about a decade before starting the Association for Collaborative Spine Research. The informal group failed to win any of the $1.1 billion from the American Recovery and Reinvestment Act of 2009 for comparative-effectiveness research.
As the president of a formal nonprofit under Internal Revenue Service rules, Vaccaro can more easily ask for money from a wide range of funding sources, including foundations and wealthy patients.
The Affordable Care Act made comparative-effectiveness research a long-term federal priority by establishing the Patient-Centered Outcomes Research Institute in Washington, a center for coordinating such research. It has an estimated budget of $650 million annually over the next six years.
The goal of that research is to make it more likely that medical treatments are based on evidence.
"Most of what we do is based on anecdotes, theories," said Elad I. Levy, a professor of neurosurgery and radiology at the State University of New York at Buffalo. "Evidence-based medicine is a holy grail."
Levy is not a member of the Association for Collaborative Spine Research, but he is involved in a similar group for his specialty, the Endovascular Neurosurgery Research Group.
Companies with products to sell are sometimes the most obvious source of money to pay for some studies, but not always.
In the case of whether it is better to operate on certain spinal-cord injuries within 12 hours of the injury or to wait for swelling to go down days later, Vaccaro and his research partners had a hard time finding financial support.
The question was timing for the operation, said Rick Sasso, president of the Indiana Spine Group in Indianapolis, and a member of Vaccaro's association. "Companies don't really care about that," Sasso said. "What's in it for them?"
As the head of a nonprofit, Vaccaro is now casting a wide net for money. "The only people I haven't gone to are the insurance companies," he said. "I haven't even thought about it. I should go to the insurance companies."
Even with money to pay for research, it can be hard to say what is best, experts said.
"This is very complicated," said Don Liss, vice president of medical management at Independence Blue Cross.
"Most want to do what's right, want to identify those procedures that work and offer them to people who could most benefit from them, but it's very, very difficult to answer those questions," he said.
Contact Harold Brubaker at 215-854-4651 or firstname.lastname@example.org.
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