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As a result, lawmakers hedged the new institute with caveats. It was set up as an independent nonprofit organization, with a .org Internet address instead of .gov. The government cannot dictate Selby's research agenda. And there are limitations on how the Health and Human Services department can use the research findings in decisions that affect Medicare and Medicaid. Selby says the institute is taking seriously the term "patient-centered" in its name. Patients will not be merely subjects of research; they and their representatives will be involved in setting the agenda and overseeing the process. "We are talking about patients as partners in the research," said Selby. Findings will be presented in clear language
-- a kind of Consumer Reports approach -- so that patients and doctors can easily draw on them to make decisions. "Our goal, our hope, is that over time, by involving patients in research, two things will happen," said Selby. "One is that we will start asking questions in a more practical fashion, so the results would speak more consistently to questions that patients want to know the answers to. And two is that, by our example of involving patients in the research, trust will rise." He expects to unveil the institute's proposed research agenda in the next few weeks. Former Medicare administrator Gail Wilensky says that agenda should focus on high-cost procedures and drugs on which the medical community has not developed a consensus, and which have widely different patterns of use around the country. A Republican, Wilensky believes opposition to the institute's work is shortsighted. "This just strikes me as a component of finding ways to treat better and spend smarter," she said. ___ Online: Patient-Centered Outcomes Research Institute:
http://www.pcori.org/
[Associated
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