By Darryl Fears, Steven Lipstein was in New Delhi preparing for a hike in the Himalayas last month when his cellphone rang. A colleague
at the Association of American Medical Colleges on the other end of the line told him he’d been selected by the Government Accountability Office to be vice chairman of the Patient Centered Outcomes Research Institute’s board.
If you’re not familiar with the board, you’re not alone. Created by the health-care overhaul law, it’s one of the newest and least known panels in government. But the work of its 21 members, if successful, could increase the public’s knowledge of medical treatments for everything from attention deficit and hyperactivity disorder to cancer. And it could dramatically change how you discuss treatments with your doctor when the law is fully implemented in 2014.
“I was very excited,” said Lipstein, president and chief executive of BJC HealthCare in St. Louis, which operates 13 hospitals with more than 26,000 employees. The board, whose academic members are scattered across the nation, has since held two conference calls to discuss its incorporation, how often it will meet and where to hold its first face-to-face meeting, probably in November, Lipstein said.
According to the GAO, the board will govern the Patient Centered Outcomes Research Institute, or PCORI, an independent nonprofit organization meant to “assist patients, clinicians, purchasers and policy-makers in making informed health decisions by carrying out research projects that provide quality, relevant evidence on how diseases, disorders and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored and managed.”
To do this, the board will direct the institute’s researchers to examine mounds of Comparative Effective Research undertaken by schools, hospitals and medical companies to study the benefits and detriments of medical treatments and determine which ones work best for patients, depending on numerous factors including health condition and age.
Gretchen Jacobson, principal policy analyst for the Kaiser Family Foundation, said the point was to “find gaps in the research and to conduct additional research to fill in those gaps. It could compare different medications to allow doctors to have more information about the comparative effectiveness.”
Last year, the government allocated more than $1 billion for Comparative Effectiveness Research in the stimulus bill. The money was funneled to the federal National Institutes of Health, the Department of Health and Human Services, which issues contracts to conduct the studies, and the HHS’s Agency for Health Research and Quality.
The stimulus also created the Institute of Medicine, which recently established 100 priorities for research, such as “comparing the effectiveness of primary care strategies like behavior strategies for attention deficit hyperactivity disorder and simple health education to reduce diseases like diabetes, cancer and birth outcomes.”
Lipstein said, “When I think of the work of the PCORI board, I think about how you give patients and caregivers the tools to do their best work,” such as coming up with questions for patients to ask about treating heart disease.
“Sometimes, when you’re a patient and a doctors says you can have treatment A, B or C, and the patient asks which is best, the doctor speculates about what is the better solution,” Lipstein said.
In an attempt to clarify the solution, the board and the institute will study research conducted on ailments such as cancer. The institute will take the most promising research and try to build on it to find treatments that work best. Over the next few years, the board is supposed to determine how to communicate its findings to academics, physicians and the public.
The board is led by Eugene Washington, vice chancellor of health services at the University of California at Los Angeles and dean of the university’s David Geffen School of Medicine. When he was contacted to explain his vision for the board, an assistant said he was not available to comment.
The GAO’s acting comptroller general appointed 19 members of the board. The two agencies that hold many of the funds, NIH and the Agency for Healthcare Research and Quality, also appointed its directors to the board.
Francis S. Collins, NIH director, said in a statement that the PCORI board’s work can build on the agency’s massive investment in comparative effectiveness research. “I’m confident that we will enable PCORI to achieve its goal of encouraging the generation of rigorous evidence that will improve patient outcomes,” he said.