June 16, 2009 - In testimony before the Listening Panel of the Federal Coordinating Council for Comparative Effectiveness Research (FCCC) on June 10, 2009, ECRI Institute President and Chief Executive Officer Jeffrey C. Lerner, Ph.D., called for devoting a substantial proportion of the $1.1 billion allocated to the comparative effectiveness research to go toward establishing a National Patient Library.
The 15-member FCCC council was created by the American Recovery and Reinvestment Act of 2009 and assists the agencies of the federal government, including the U.S. Department of Health and Human Services and the Departments of Veteran Affairs and Defense, as well as others, to coordinate comparative effectiveness and related health services research. The Recovery Act appropriated $300 million for the Agency for Healthcare Research and Quality, $400 million for the National Institutes of Health, and $400 million for allocation at the discretion of the Secretary of Health and Human Services to support comparative effectiveness research.
“The ability of patients and their caregivers to compare treatments and not just rely on others to tell them what to do is a powerful way to harness market forces in the service of better care. It allows the public to take statistical information and decide how that information applies to them as individuals,” states Lerner. “A national library, rather than a piecemeal collection of studies and initiatives, would create a concrete legacy for the new movement to compare how well pharmaceuticals, medical devices, and clinical procedures work.”
The National Patient Library would benefit patients by giving them easy-to-understand information about the comparative effectiveness research produced under the American Recovery and Reinvestment Act and from other public and private sources. The Library would gather information designed for patients that meets an evidence standard so that patients, their families, and their professional caregivers can make decisions based on the best available scientific information. The Library would also further the way information is developed and presented by bringing to bear knowledge and techniques from behavioral economics, cognitive science, communications, as well as other social sciences.
In testifying before the FCCC panel, Dr. Lerner highlighted ECRI Institute’s experience in producing evidence-based patient information beginning in the 1990s when the Institute used it to help breast cancer patients understand that high-dose chemotherapy administered with autologous bone marrow transplant was more likely to harm or kill them than to prolong their lives for a greater period of time than would standard chemotherapy.
For a free download of Lerner’s National Patient Library testimony, go to: https://www.ecri.org/Forms/Pages/FCCC_Testimony_National_Patient_Librar….
May 17, 2024 
