First PCORI Report Short on Specifics
Rather, the panel said, it was more important to "define the boundaries" and "define the types of questions that we want to invest in," says Krumholz, a cardiologist who directs the Yale-New Haven Hospital Center for Outcomes Research and Evaluation.
Eventually, says Krumholz, the commission wants to look at how patients make choices and how they have access to information to make informed decisions. And it wants to understand how to conduct research with patients to test different approaches.
"Take Joe Paterno (former Penn State football coach who died Sunday after developing complications from chemotherapy)," Krumholz says. "I don't know how informed he was about how an 85 year-old with advanced lung cancer, what those kinds of options are and the likelihood of dying from chemotherapy might be versus taking a more palliative care approach, versus some other option that he might have had.
"Most people in that situation are baffled by their choices and lack personalized estimates of what their risks and benefits are."
"We had no shortage of urgent questions that needed to be addressed," Krumholz says, adding that "the circumscribing of an agenda around a small number of them, however important they may be, would lead to the exclusion of others."
Tanisha V. Carino, senior vice president of the independent health advisory firm Avalere Health, said she was initially surprised by the report's lack of specificity about the burden of disease, such as heart failure or pneumonia.
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