The new 15-member Federal Coordinating Council for Comparative Effectiveness Research, authorized under the American Recovery and Reinvestment Act (ARRA) to assist federal agencies in coordinating and comparing the effectiveness of health services research, heard suggestions from the public April 14 in Washington on where to focus its efforts.
The goal of comparative effectiveness research (CER) is to provide information on the relative strengths and weakness of various medical interventions. Individuals participating in the listening session—representing provider, patient, research, medical education and other healthcare organizations—urged the panel to consider a variety of options.
John Martin, director of Premier Research Services, a research group owned by nearly 200 not-for-profit hospitals and healthcare organizations, urged the council to make sure that CER be aimed at "true research"—not administrative activities—and that the research be patient-focused.
Rather than just rely on findings from clinical trials, attention should be focused on whether a treatment "provides the greatest benefit to the patient in a real-world healthcare environment," Martin said. To that end, he suggested that results for CER "should be used as a guide for the best available treatment based on quality, safety, and efficiency—but not as a substitute for provider judgment."
"The care provider and the patient should have the opportunity to fully weigh each measure in selecting the best pathway for care," Martin added.
Collaboration also will be important. "Our experience has shown that involvement of stakeholders such as hospitals and healthcare systems early in the process—if it's considered in the development of research priorities—more likely will lead to the transition from research practice to use in acute healthcare facilities."
Harold Miller, president and CEO of the Network for Regional Healthcare Improvement (NRHI), a nationwide coalition of regional collaboratives, said it is difficult to "do good comparative effectiveness research if you don't have good data on the use of treatments and outcomes that result."
"Moreover, what matters is the effectiveness of treatments in the real world—not in the laboratory," Miller said. The "fastest and most cost effective way to get real world data" is to build on the "extensive quality measurement and data collection" that are already being developed around the country—such as through the health collaboratives, he said.
Jeff Allen, executive director of Friends of Cancer Research, noted that CER historically has used data and evidence obtained through literature reviews of individual trials. These reviews generally cannot "create new knowledge" and "provide little insight into the effectiveness of healthcare interventions outside of clinical trials," he said.
Instead, he called for new ways of thinking—such as linking public and private healthcare databases (such as insurance claims)—which would have the potential to "generate an unprecedented amount of information for a variety of research activities."
Myrl Weinberg, president of the National Health Council, which represents the interests of individuals with chronic diseases and disabilities, noted that efforts should be made to "disentangle the findings of good comparative effectiveness research" from insurance coverage and reimbursement decisions.
"We need to break the immediacy of that relationship in order to avoid denial of appropriate care," Weinberg said. Weinberg noted that patients' greatest concern was that CER will be used "inappropriately to deny access or to funnel them into a one-size-fits-all mode of care."
Elena Rios, MD, president and CEO of the National Hispanic Medical Association, which represents Hispanic physicians, said that CER could add to the body of knowledge to assist in reducing healthcare disparities. It also could help promoting effective ways of communicating with Hispanic patients and their families.
Earlier this year, 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 CER. The council will make its recommendations in June.