Patient Sentiment Essential
During our interview, Flum explained that it was critically important to reflect patient sentiment in any definition of patient-centered outcome research. A lot of feedback the committee received from patients "highlighted the fact that when people hear about research, one of their major complaints is that it fails to engage them in a conversation, and fails to use language they understand. It doesn't allow their voice to be heard."
"It's essential that the research we do helps people make improved decisions," he says.
That sounds like research proposals to examine how researchers and providers can be better communicators about their findings might get some money.
The desire to expand the definition of patient-centered research reminded me of the need, highlighted in a study this week from the Dartmouth Institute and the Informed Medical Decisions Foundation, to get a better handle on what patients are told about their procedures before they undergo them.
For example, researchers found recently that many Medicare patients who underwent certain procedures said their physicians gave them no advance information about more conservative options with similar survival outcomes.
That study, however, was flawed by the fact the patients answered the survey on average 14 months after they were discharged and may have forgotten what they were told. Other projects should ask such questions much sooner, perhaps tagged to post discharge surveys required by Medicare.
That's "absolutely" the idea the definition is trying to get at, Flum tells me. "One of the components we're considering right now is the timeliness issue...and for how long patient-reported outcomes are tracked and whether there's an appropriate window."