Dr. Joe Selby has been executive director of the Patient Protection and Affordable Care Act-created Patient-Centered Outcomes Research Institute for almost three years now, but he still spends a lot of time explaining what his organization does and does not do.
PCORI is not, for example, another government agency but rather an independent, self-governed entity, said Selby, who spoke at the American College of Physician Executives annual meeting in Chicago. No one has to participate in PCORI research. PCORI does not maintain a large, central patient database. Nor does it ship large amounts of identifiable patient data to researchers across the land.
What PCORI does do is assist patients, clinicians, purchasers and policymakers in making healthcare decisions, Selby said. PCORI focuses its research on findings that are likely to change clinical practice and investigations where the outcomes have to matter to patients.
“A high percentage of clinical and policy decisions are not supported by evidence,” Selby said.
Dr. Kent Bottles, a senior fellow at Thomas Jefferson University's School of Population Health in Philadelphia, noted that “half of Congress is not happy” with the ACA and asked Selby how that affected his work.
“There is a natural tendency to not like something the other side has put forth,” Selby said. “We're part of the Affordable Care Act and there's opposition to the ACA.”
At any given time, Selby said, there is legislation in place that would “wipe out PCORI” based on the premise that it sponsors research on healthcare rationing and death panels. “We are clearly not that,” Selby said, noting that the institute shies away from cost-effectiveness research.
The key to accomplishing PCORI's mission, Selby said, will be getting patients engaged in research that stands to benefit them. This includes spending $16.8 million to support new or existing “patient-powered” research networks (PDF).
“Patients are ready,” he said, describing their participation in electronically facilitated data collection as the “secret sauce” needed to successfully generate timely, useful research using data already collected in electronic health records.
“Current research is too slow, too expensive, unreliable and doesn't answer the questions that matter most to patients,” Selby said.
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